Friday, April 30, 2010
We made it back here Tuesday for our appointment to sign all our consent forms... signed our little girl up for drugs that are so powerful we will not even be able to change her diapers without wearing gloves.
Common side effects (happen in 20-100% of kids) could include: loss of reflex, loss of hair, nausea, vomiting, decrease in red and white blood cells, decrease in platelets, decreased ability to fight infections, inability to have children, hearing loss, damage to kidneys, bad metallic taste- loss of appetite, mouth sores, inflammation of the throat, allergic reaction to the drugs, and did I mention vomiting. And that’s just the common ones!?! One of the nurses said that in the beginning it’s the nausea and vomiting that is one of the hardest things to cope with for a lot of patients. It sounds like losing high range hearing is quite common and for these little ones that makes learning language much harder; we were sad to hear that about half of the kids with this treatment end up with hearing aids.
Her surgery to put in her permanent line went well, a Hickman line is new for a lot of the staff here and everyone seems quite excited about it. I guess its more user friendly than the older style they used? Blood can be drawn from it with ease and all drugs can be administered through it. The doctors and nurses kept asking how “we were doing” through this surgery, we said this was nothing; she had brain surgery last week! We will have to learn how to take care of this line so that we are prepared if we get the chance to go home, or at least to our new home at the Ronald McDonald house.
At the same time as the surgery they did the lumber puncture test, this would tell us if there were any other cancers hiding in her spine. If it came back positive it would have changed our whole course of action, possibly to include radiation immediately. But our doctor expected this to be clear... AND IT WAS! No extra complications that way. That definitely swept a deep dark shadow out of the back of our minds.
She had her kidneys tested yesterday morning, a bit of radioactive dye put through her system and then a series of blood samples taken every hour to see how her kidneys were working. The lady at the imaging thought her kidneys looked “lovely.” I have not seen a whole lot of kidney scans done and cannot really comment on that, but I’m sure they are as cute as she is. In fact we are starting to have nurses just stop by because they have heard about how cute our little red head is. Please pray for protection of her kidneys during this whole treatment; I guess it is fairly common for them to dump salts and phosphates back into her system.
Her hearing was tested this morning and she showed great response to all the tests. Please pray with us that this will be the case on all her hearing tests over the next 6 months. About half of the kids that go through this treatment will need hearing aids, especially for the high range hearing that she needs while she is developing her language skills. I guess the upside of the downside is that there are some pretty cool looking hearing aids out there these days, very tiny and in any colour we want. Oh goody. But we are praying it will not come to that.
We actually started administering the chemo drugs yesterday (April 29th) she tolerated them well with no allergic reactions. We were told that we probably will not see the effects (besides vomiting) immediately, they will develop over the course of the week. We will start our second round in an hour or so, once she wakes up from her nap. We did not have a great sleep since about 6 this morning so we are letting her catch up before we get started.
She has been so good and such a little helper. The nurse keeps asking Charlotte where things like the stethoscope, blood pressure cuff, heart monitor and thermometer go (we do these vitals every 4 hours) and each time Charlotte reminds her, and points out how to do it. Our silly nurse keeps forgetting, good thing Charlottes on the ball! All the nurses and doctors are so great here; everyone has little tricks and plays cute games. Our Oncologist has a delightfully squeaky nose that Charlotte loves to press. Although we really don’t want to be here, this really is a great place for kids.
Thursday, April 29, 2010
We have had a lot of information to soak up in the last two days, all sorts of things we have never thought about... or ever wanted to think about. We have an entire binder with new information to carry around to help us remember: types of drugs, side effects to expect, tips on dealing with the side effects, support groups to contact, tests to expect, doctors and nurses to call, names to remember, the list goes on.
We arrived back here Tuesday April 27th for a meeting with our oncologist to hear about what “our” plan is. We were told that Charlotte will have “conventional chemotherapy followed by dose intensified chemotherapy with stem cell support.” So what does that mean exactly?
First we will go through some tests, checking her kidneys and hearing, taking numerous blood tests, a lumbar puncture to make sure there are no other cancer cells (in her spine) that they did not see. A permanent (Hickman) line will be put into her chest so that chemo drugs can be administered and blood be drawn without having to poke her each time. Charlotte’s treatments will go in 2 phases, Induction and Consolidation. During the Induction phase she will receive three cycles of chemo. Each cycle consists of four standard chemotherapy drugs, which will be administered to her over a period of three days with one of them being administered twice more during the cycle. Each cycle will be 21 days total if all goes well. During this time she will also have her stem cells harvested by a process called apheresis. Let me quote what the doctor’s hand out says about this.
“The apheresis procedure is similar to donating blood, except when the blood is slowly removed from the body, it is routed through a machine that is able to remove some of the new healthy cells (the peripheral blood stem cells) and return the remainder of blood into back in to the body. The process is not painful, but will require 4-6 hours to complete the procedure each time it is done. The cells collected will be stored and reinfused later during treatment. This harvest will be repeated again after the second and third cycles of chemotherapy.”
The Consolidation phase will also have three cycles and consist of two intense chemo drugs. These drugs will hit her a lot harder so they plan for the cycles to be around 28 days (or more) to allow her blood counts more time to recover. During this phase they will reinfuse her stem cells to help speed the recovery of her blood counts.
We were given pages of information to read and sign with our consent to start this treatment. That was tough, especially on Rob, how could we read all the horrible side effects that go with each one of these drugs and then sign up for them all at once? But I guess this is the very best that we can to at this point in time, we pray that the future will hold better methods.
Saturday, April 24, 2010
I wanted to share a few of our "ups" to go with our "downs." We had a great day just hanging out in the yard... seems like it should just be another day but it means so much more now.
Blowing some bubbles, I think she dripped more on her dress than she actually used. I am amazed at how fast she is recovering from surgery.
Thursday, April 22, 2010
(if you want to skip all the depressing stuff the last paragraph is happy)
Supratentorial primitive neuroectodermal tumors are fast-growing tumors that form in brain cells in the cerebrum. The cerebrum is at the top of the head and is the largest part of the brain. The cerebrum controls thinking, learning, problem-solving, emotions, speech, reading, writing, and voluntary movement.
Standard treatment of in children 3 years old or younger is usually surgery followed by chemotherapy. Other treatments may include the following: Surgery followed by high-dose chemotherapy with stem cell transplant, Surgery followed by combination chemotherapy and radiation therapy to the area where the tumour was removed.
High-dose chemotherapy with stem cell transplant is a way of giving high doses of chemotherapy and replacing blood -forming cells destroyed by the cancer treatment. Stem cells (immature blood cells) are removed from the blood or bone marrow of the patient or a donor and are frozen and stored. After the chemotherapy is completed, the stored stem cells are thawed and given back to the patient through an infusion. These reinfused stem cells grow into (and restore) the body’s blood cells
Taken from : http://my.clevelandclinic.org/disorders/ewings_sarcoma/ hic_childhood_supratentorial_primitive_neuroectodermal_tumors_and_pineoblastoma.aspx
We will have our official meeting with the oncologist on Monday to discuss Charlotte’s treatment plan in detail. But we did have a meeting before we left (on Wednesday) that gave us a rough outline of what to expect for the next 6 months. Her treatment will be the high-dose chemo with stem cell transplant as I have copied above. She will have her own stem cells collected to use for the transplant afterwards (that requires a lumbar puncture “spinal tap.”) That makes me shiver to even think about it. The first three sessions will be in a 21 day cycle; 3 days of receiving drugs with 18 days of recovery. The next three sessions she will be “hit harder” with 4 days of receiving drugs then a stem cell transplant, this will be in a 28 day cycle.
We were given a list to look over of all the drugs that will be used and all the possible side effects... including: vomiting, hearing loss, seizures, low blood counts, and overall weakness just to name a few common ones. It sounds like Rob and I will be staying at the Children’s Hospital (and the Ronald McDonald House) for the most part, Charlotte will be an inpatient while receiving chemo and then she will stay with us at the McDonald house for the rest of each cycle. Of course she will be very immunosuppressed so we will not be able to venture far, it does not sound like we will see many activities in the sun this summer. I think we will get a t-shirt made with “Mirror Mirror on the wall, Charlottes the fairest of them all.”
Picutre taken on our last day there... she has perked up so much already, amazing!
On a much brighter note we are back home. Our little family is back together for a few days and we are enjoying every minute of it. We were discharged on Wednesday around noon and made it to my Mom and Dad’s for supper. Charlotte got so excited when she recognised their gate as we drove through, she put her hands up in the air and went “whoop whoop.” (That’s usually only something she will do when provoked by an auntie in party mode.) It was so good to see her and Yolanda reconnect, giggles and hugs were exchanged all night. Within 2 hours she made more progress with her physio than she had all week at the hospital. She is now voluntarily using her right arm, and by last night had taken her first un-aided steps. We had such a great day today, made some crazy forts and blanket tents, mostly acted silly and giggled all day. I unpacked and sorted out everything, gearing up to repack for the long-term. Yolanda is still trying to sort it all out, this will be so tough on her. We are hoping that by our second “cycle” we will be able to plan for her to come and stay with us at the McDonald house for a few days.
You probably will not hear from me again until after Monday when we are back up at the Children’s Hospital.... time to focus on what I need to do here.
Thank you for your support through all this.
Tuesday, April 20, 2010
I just wanted to let you all know that I have started up my blog again to post Charlottes latest information. I thought instead of plugging up your inboxes with picutres I will post them there. The way the blog is set up is that the first email that I sent out is the last post you will read. So the most current one is on the opening page. There are some before and after MRI picutres, I hope that they dont make anyone queezy. (Two here, more on the previous post.)
Today was a long day of waiting for us, but a really nice day of seeing Charlottes recovery too.
Today was the "BIG meeting" all the doctors from surgery, oncology and more were going sit down to take a look at the results of the tumour and formulate a plan of action. After sitting on the edge of our seats and jumping every time a group passed our door all morning we were told that they would not meet until 4:00 and someone should stop by after that. We relaxed a bit... at least until 4:30. Then again we watched the door out of the corner of our eyes... finally around 6:30 we asked our nurse if she could find anything out, even just a time someone might be by. I guess the plan was to talk to us during their morning rounds tomorrow! AAARRRRGHHHH. So again we will wait. I cant say that its really anybody's fault, it was just frustrating. That was combined with the fact that we were told we might get to go home today but since Charlottes not eating or drinking much they need us to wait until she back on a full diet. Every time we turned around we waited to see if she would take a bite!
This morning, finally, her appetite has returned. She ate fairly good at all three meals. She gets really excited when the kitchen lady brings in the tray, but by the time her fork gets loaded up her interest has waned a bit. Hospital food been fairly good, they really cater to little ones, things like kraft dinner, french fries, pizza and Cheese strings. Rob and I have been eating quite well too, lots of family and friends bringing us meals and snacks. By suppertime she picked away at her food from 5 until 8:00 we just kept offering her more and more. Not that she even ate as much as she would have at a regular meal at home but we were happy that the food held her interest that long and she was at least nibbling on it.
She was quite perky today and gave smiles to everyone. We spent a few minutes outside on the play centre with the physiotherapists... of course this was the only time she did not cooperate all day. Shes not quite walking on her own yet, her legs are pretty wobbly, but using our hands for balance she will walk across the room. Physio is happy with how her right arm is doing, we are doing lots of exercises to extend it. She tends to keep it tucked in by her body and not use it. But we know that she CAN use it so now its just a matter of convincing her to actually use it. It is sort of like watching a 6 month old baby trying to use her hands... except that Charlotte knows how it should be acting and gets mad at it. (A red-head temper thing I think!) But REALLY we had a really good day, played lots with all sorts of exciting new toys from the playroom here. She was so cheery with all the nurses and checkups they gave her, she is even getting better at taking all her medicines. (Shes down to tylenol, graval, another one to calm her tummy, and an anti seizure one.)
Please pray for our official diagnosis tomorrow, that the doctors were all surprised and its not as agressive as they initally thought. That way the chemo needed will not be as agressive either. And for Charlottes eating, the sooner she gets on track the more days we will have at home before chemo treatments start. It will be so nice for Charlotte to be home with Yolanda. We cant wait to have our family back together again, even if its just for a few days.
Love Allison and Rob
Monday, April 19, 2010
Saturday, April 17, 2010
Its been a good day and its been a rotten day.
Charlotte was off all her IVs today, nothing hooked up anymore. We were visited by quite a few different teams for assessing her and everyone thought she was doing really great. Physiotherapist, speech therapist, occupational therapist. The occupational therapist brought some toys and played for a bit, we had Charlotte sitting up (with assistance) for about an hour playing. She has a great range of motion back in all her limbs, better than the weeks leading up to the surgery. She has a bit of trouble with her right arm and knowing where it is in space; she will make the right motions (grabbing a button) but the location is out by a few inches. Once place her hand on the button then she can find it again with no trouble. Her left eye is still puffed closed so that could be part of the problem. Swelling has gone down lots though, sitting up in our arms most of the day has helped I think. She was quite perky at lunchtime, I had jello and ice-cream out as her options. With one cup on each knee as I was feeing her she clued in and started ordering what she wanted next by pointing to my knee. If I messed up and scooped the wrong thing she refused until I dumped it and re scooped the proper dish. Smart cookie. She was fairly cheery today too, now as I write this she is babbling some cheery nonsense to her dolly in her crib. But she will stand up for how she wants things; she would have none of the heart monitor we tried taping on her toe tonight. Ripped that off several times already, the nurse is gong to try sneaking it on once she is asleep... good luck to her!
We have also spoken to the oncologist today. Although they are really not wanting to put a title on this tumour until the official results come back from pathology they do have a pretty clear picture of what it is. It wasnt good news. This is a fairly aggressive tumour and although it looks like surgery removed everything it could grow back quite rapidly. Because she is so young radiation is out of the question for now. The tenitive "plan" would be to let her heal for two weeks. Do a "spinal tap" for a sample of whats going on in her brain and spinal area as far as tumour cells go. At the same time they will take a bone marrow supply to transplant back into her at a later time after hers has been hit by the chemo. (This will help her heal herself faster.)
Then hit it hard with chemotherapy, 6 sessions of something fairly aggressive and then assess things. If needed more chemotherapy until she is old enough to withstand the radiation treatments. We were told that there is a chance that all we need are the first 6 sessions. So at minimum we could be here for 6 months. They want to keep her here at the Children's Hospital during treatment to keep a very close eye on things. We have a room set up at the Ronald McDonald house, which is wonderful. They are amazingly clean and strict about it so it will be a safe place for a immunosuppressed little girl.
Long range it is much to early to tell... if the first bout of Chemo does the job we would be sent home. Every 3 months we would come back for tests and MRIs for the first couple of years, then it would bump down to every 6 months... and then a to a year. She will likely need these check ups for the rest of her life. But we keep being told that until the test sample results come back none of this is in stone... we are taking this opportunity to pray that this diagnosis can still change. ROb has written on our bulletin board "With God all things are possible-no cancer"
First things first though and she has to heal up from this surgery. They will not start anything until two weeks after her surgery... thats a little more than a week from now. After our big meeting on Tuesday we may be sent home for a few days (like 3 or 4.) It will be a bit crazy Im sure, we will not likely see anyone or have any visitors in attempt to try and keep things as calm as possible. And keep away as many germs as possible.
We really appreciate everyone offers for help and support. At this time we are obviously overloaded with whats going on immediately in front of us here and not thinking at all about whats going on out side of this hospital room. We have asked our sisters Kelly and Cheryl to take on the task of delegating any tasks or chores that might come up. If you would like to offer help please contact one of them. Kelly can be reached at firstname.lastname@example.org and Cheryl can be reached at email@example.com as needs arise we will let them know about what can be done or what we specifically need help with.
And there you have it, our roller coaster of a day.
Please stand with us that we will have a better prognosis once results come in. We were given a beautiful little book called "Hope for each day" I turned to Charlottes birthday, July 21, and read: Thanks be to God, who gives us the victory trough our Lord Jesus Christ. 1 Corinthians 15:57. Pray that Charlotte will have this victory.
With all our love, Rob and Allison
Well we are in much better spirits today. We know that there is still a long road ahead of us but the urgency and strain have been relieved by the surgery.
Charlotte is quite still today, the morphine is keeping her quiet. But each time she wakes up she makes a little contact with us. She nods in response when we ask about juice or her soother. Her right leg has responded well, it already seems to have the range of motion that her left has. Her right arm has more movement than before, but is not nearly as strong as her left.
We were moved out of ICU around 3:30 as she was stable enough to head back to our regular ward. All of her wires and tubes have been removed except for the main one in her pelvis. This has made her much more touchable and huggable again. It nice not to worry about her yanking at everything. Her arms are still restrained with ties to either side of the crib so she cant get herself into trouble.
At supper time she had some juice and soup squeezed into her mouth that has stayed down, looks like tomorrow she will be able to have food again if she feels up to it. We got a couple of big smiles at supper time from her, mostly they were for her daddy- im trying not to be jealous. Amazing to think she could go through all that yesterday and have a smile for us today already! Her sweet little face is very swollen, her left eye is swollen shut and her ear is poking out at a funny angle (normal Im told.) But it should all go down within a week. The doctor thought she may even be walking around by the weekend!
I think she is starting to have little nightmares, she will be so calm and at rest one minute... and then all four limbs suddenly sticking up flailing, her heart races and she gets super panicked sounding. The first time (who am I kidding... still EVERY time) she did it we panicked. (Thought it could be a seizure or something.) She is fairly easy to calm down afterwards, just needs a snuggle and little song. We think its just nightmares but even at that it is keeping her from getting the total rest that she needs.
Time for us to try and get some rest too.
Love, will, hold us together
Make us a shelter
to weather the storm
And I’ll, be, my brothers keeper
So the whole world will know
That we’re not alone
This is the first, day of the rest of your life
This is the first, day of the rest of your life
‘Cause even in the dark you can still see the light
It’s gonna be alright, s’gonna be alright
Thank you all so much for your prayer and support. It is so great to see so many encouraging emails waiting every time we open up our inbox. At this time Im sure you understand that I cant possibly respond to everyone's wonderful offers, or even thank you for the specific things done. But know that we appreciate each and every one of you. We could not do this on our own, you talk about how strong we are... but we are truly being held up by you.
We have seen such an amazing prayer network spring up, I cannot believe the support. All across the country... and world! God is so great and it is on his promise we will stand. Jeremiah 29:11 For I know the plans I have for you, "Declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future.
Charlotte is doing amazing. Already by this evening she was alert and starting to pull off all her gizmos and gadgets that keep her monitored. They took out her breathing tube, gave her just the little nose oxygen supply plug. This made her look much less scary. Soon even the oxygen wasn't needed. Next came out the line into her stomach. She really started to respond by this time, mad mostly, but thats to be expected. Her right leg has more power and control than we have seen for three weeks, she was squirming and kicking off the blankets. Her right hand could tighten a little when I put my finger into it but it did not seem to have any power to it, it is still quite still.
By about 10:00 she was responding to a few questions, do you want some juice got week nod. I dipped a little sponge into some water for her to suck and she went wild, "more" she said and started mouthing around for the sponge. At one point I was too slow between dips and she found Daddies finger and chomped down. Two glasses of water later we got a big "More" with a big nod, it was so good to see that it really was our spunky little Charlotte in there. Unfortunately we had to take the water thing slowly as to not overwhelm her little tummy after being empty for so long. Again she got mad and started ripping things out. Sort of like the HULK only she turns red.
Her poor little head is quite swollen on the one side. She has a big C shaped incision from temple curving back and then around to the top of her ear. But its amazing to think what went on today. I mean really, her head was open for over 3 hours this morning and now here she is demanding her water, kicking off her blankets and pulling off her monitors. It also looks like her hair will cover most of the incision, no scar should be visible. We have had amazing doctors and nurses, they have all put up with Rob very well. The first anaesthesiologist that we had came back to visit us because he noticed that Charlotte and his daughter, Juliet, shared the same birthday. After we visited it turns out that Yolanda and his older daughters birthdays are less than a week apart. He knew we are from out of town and gave us his home phone and cell number and said call any time if Yolandas bored and wants a playdate with someone her age or we need anything for Charlotte. Isnt that special! We have had wonderful care here.
I had better get going to bed, Charlotte is in the ICU and has her own dedicated nurse tonight. We are taking advantage of that and will sleep soundly in a nearby room. Tomorrow we will likely be back in our shared room upstairs.
Thank you all, With Love from Allison, Rob, Yolanda and especially Charlotte!
Friday, April 16, 2010
It started at about 2am when Charlottes heart rate dropped really low. Our nurse ran in to check her vitals, she was not responding and we could not wake up. "Code Blue" was called and our room swarmed with about a million people, I think half the hospital staff were there. It was awesome how fast their team responded, some of the nurses and doctors were short of breath from running. Our surgeon was called in, things swung into motion. Honestly it was all a blur. The entire operating team was paged and waiting for the call should they have to start at 3am. We all headed down to ICU where things could happen quickly.
Charlotte responded wonderfully to the combinations of drugs and techniques they used to stabilize her. A strong saline was given to draw some pressure away from her brain. Some steroids, something for pain... Im not even sure what else. They put in a breathing tube to help too. Our neurosurgeon, Dr Hader, really wanted to give her the chance to stabilize so that the team did not have to come in at 3:00. She responded well and he gave the Ok for everyone to get some sleep. If they would have had to start at 3am he would not have had is usual team of anaesthesiologist and nurses, his team has been working together for 7 years. So we really prayed that Charlotte would settle.
Around 6:30 or so they started getting everything ready. She was mostly prepped already during the course of the night. Around 7:30 we gave her a last few kisses and she was whisked away to the operating room. Initially we had been told the the operation could take 2-4 hours, once her MRI came back and they got a really good picture of the beast we were warned that it could take up to 7 hours! Thankfully a good portion of it was right at the surface (maybe about the size of... um... something bigger than a toonie, an oreo cookie maybe) that made access to it really easy. We were so blessed to be surrounded by family during the whole wait. The nurse came around to give us an update, things had started well. That definitely helped calm our nerves.
We were able give her kisses again shortly after noon. Amazing to think of what was done in those few hours. She spent just over 3 hours actually in the surgery. They were able to get out everything they could see. Thank you all so much for all your prayers for this. The tumour itself does not have the characteristics of the really benign tumours that Dr Hayder had first speculated about. Unfortunately he said it does look to be a little more on the aggressive side. We will not know for sure until results come back from foothills, hopefully Friday or Monday. Please continue to pray that this is a non-aggressive tumour.
We have seen the pre and post MRI scans side by side, amazing. This tumour was 8cm by 6cm on the top surface. It was huge. Already it looks like her brain has regained some symmetry. There should be two cavities with fluid that run parallel down either side of the center, but the tumour had pinched her left one closed. This has opened up already and is looking more symmetrical. We have been told that it will never "bounce" back to fill that cavity but it should move back a little.
I do have more to say but they should be removing her breathing tubes soon and I would like to be there........signing off for now.
Thank you all for standing beside us on this long hard day.
I will just send a quick update while Charlotte is resting on her daddies shoulder.
We had the MRI scan last night around 7:00, Charlotte needed to go under general anaesthesia to keep her still long enough. She came out of that screaming mad, but things were ok. The scan showed no growth and no changes. It showed very clearly where the tumour is, thankfully its right on the top of her brain, a very easy spot to get at. Unfortunately it goes quite deep. Fortunately it has a large cyst around most of it, this should make it easier to remove. In cranbrook we had the idea that it was about the size of a golf ball or bit bigger.... but its bigger than that.
As of last night our surgery was booked for tuesday morning at 8:00. Based on the CAT scan our doctor initially said that it could take 2 or more hours. We talked to the surgeon this morning, and he told us to expect more along the lines of a 4 to 6 hour surgery. This is a very long time for someone this little. She will need a blood transfusion. Since there is not time for Rob or I to supply blood please pray that a match is found easily.
Charlotte is quite a bit stiller today than she has been. There is talk about even bumping her surgery to today. Because it will be such a long one they are hesitant to start anything later than noon. We have been told not to let her eat or drink, just in case. We should know within the next hour. Please pray that whether today or tomorrow, the right decision will be made.
The Doctor gave us a few hypotheses of what type of tumour it is, he said it seems to be very slow growing. Most of the names he gave us have the term benign with them, it does not sound aggressive at any rate. Although the only way to know for sure will be to take samples once its out. But because it is so big we were told that they might not be able to get it all at once. She is so little that there is only so much her body can handle, a second surgery might be needed. Please pray that this will not be the case, it will be cleared out in one go.
We are believing in God for a total recovery, please keep us in your prayers especially today and tomorrow as we prepare for this surgery.
Love to all of you, Allison and Robert
Though an army may encamp against me, My heart shall not fear; Though war may rise against me, In this I will be confident. For in the time of trouble He shall hide me in His pavilion; In the secret place of His tabernacle He shall hide me; He shall set me high upon a rock. I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!
April 12... part 2
Just wanted to let you know, surgery is still on for tomorrow 8am.
This will be good as it will give Yolanda a chance to get up here and see her sister beforehand. Hopefully seeing Yolanda will perk Charlotte up a bit. She missed her so much yesterday, looking out the window and asking for her.
Thank you all so much for all the encouraging emails. Keep them comming.
April 12... part 3
Thank you all for you continued prayer and support.
They will start prepping her for surgery at 7:40.
If you read this tonight we would appreciate a prayer for a solid nights sleep for all of us. She was really riled up after her MRI last night and tired herself out... so she was quite drowsy and sleepy all day, I hope that this will not interfere with a good nights sleep. Please pray that she stays stable throughout the night as well, her little heart and all systems are strong.
Allison and Rob
At this time there is nothing we can really do but wait and pray.
We made up to the children's hospital in good time yesterday and got settled in here. We still don't know much more than we did back in Cranbrook. An MRI is scheduled for sometime later this afternoon, so that will give us a clearer picture of whats going on. Then surgery for removal will be tuesday or wednesday, they are still shifting around the schedules for us. Once it is out we will know what kind of tumour it is and what the next steps might be.
We have a wonderful Doctor taking care of us. Unfortunatly she said that as far as tumours in children go this is a fairly large one. It is on the left side of her brain and pushing it towards the right. Charlotte is getting a bit of steroids to help with the swelling, but it seems to be upsetting her tummy a bit. The nurses are great, although are having a hard time trying to get an IV in her. Apparently red heads have very tough veins to hit and she has bandaids on both arms to prove it. Fortunately another attribute to redheads it that they are stubborn and tenacious, we have seen this in Charlotte and know that this will be an asset in the days to come.
Charlotte still tends to be the cheeriest in the room, we are so very glad that she is blissfully unaware of what is going on. There is a beautiful fish tank here at the hospital that she loves to watch. We are so glad for this facility.
Your prayers are very much appreciated.
Love the Amsings
This will be a hard email to write and read... and it will not be the last I'm sure.
As some of you know Charlotte has had some trouble walking lately, it started about two weeks ago. Her right leg was all wonky, her knee locking and she kept falling over. It got worse to the point where one night she just sat down and crawled; it seemed to get better and then worse and then better. We had her in to the doctor who thought it looked odd as there was nothing that looked wrong. So we were referred to a paediatrician... but that was booked for the end of the month. Other than that she has been completely healthy and happy, and not in any pain.
A few days ago we noticed she was not using her right hand well either. So I got her in to see the Doctor again (Today) with this new development it was more obvious that something was wrong-worse than growing pains. By the end of our check-up he referred us right up to emergency to see the paediatrician who was on call. Charlotte was a great little patient, making everyone laugh at her antics.
To get a better idea of what could be going on they gave her a cat-scan. The anaesthetic wore off before the scan was finished and our little redhead started taking all the monitoring equipment off and waving it around "somebody looking for this?" A second dose kept her groggy for a bit. We were put in a room while the anaesthetic wore off. Then the tone of our appointment changed. The Doctors came in very sombre and told us that Charlotte has a tumour on her brain. They were very surprised at how happy she has been because for a head that little it is quite a big one. The pressure from the tumour is what has been causing her limbs the trouble.
What now? In the morning will be on our way up to the Childrens Hospital in Calgary. There will be a neurosurgeon waiting to see us. They will do an MRI scan to see what else they can learn. Then there will have to be a tissue sample taken. The doctors here warned us that "it will be a long hard road."
We would really appreciate all your prayers, for safe travels on the roads, for quick diagnostics, and for the strength to make it through these next couple of weeks, and months. We are especially praying that they will find this tumour to be benign and not malignant.
I guess my first step will be just to pack for tomorrow... and take this road one step at a time.
Allison and Rob