It's been a week of settling in at home, getting back into routines and keeping Evelyn comfortable. She has been experiencing some side effects from the chemo she had last week. Tuesday afternoon we noticed a rash starting all over her body and her itching like crazy. We left it for the night but in the morning it had gotten worse. We called the clinic and they asked us to come in so they could take a look at it. Turns out its a common side effect from the particular chemo drug used called methotrexate. We were told to give her Benadryl and keep an eye out for a fever and it should settle down by itself. Evelyn was originally scheduled to come in for blood work and a check up on the Thursday but they were able to do it when were were there so no extra trip was needed. Her diaper rash and mouth sores also came back full force. We got a couple more prescriptions to deal with those. As long as we stay in top of everything Evelyn seems comfortable and her normal self. We were home mid afternoon Wednesday, looking forward to relaxing that night and not having to go back in the morning. Unfortunately Evelyn had other plans - shortly after putting her to bed around 7:30pm she threw up and out came her NG tube. Because of the chemo we had to give her later that night the tube needed to go back in and couldn't wait until morning. We packed a quick bag and Steve took Evelyn to Mac emergency to put it back in place. By midnight we were all sleeping soundly in our beds. We are learning to quickly adapt to sudden change of plans and unexpected hospital runs :). Evelyn's next scheduled clinic visit is on Thursday if nothing comes up before then; hopefully it's a quiet week :).
Lindsey and Stephen
Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go."
Monday 30 September 2013
Tuesday 24 September 2013
September 24 - Day 35
We are home!! :). Last night we were able to come home and rolled in the driveway late last night. Sunday and Monday at the hospital were quiet days, playing the waiting game. Evelyn's blood was taken every day to check her levels - once the chemo was completely out of her system we were free to go home. This usually takes about two days but can sometimes take longer. On Monday around 3:00pm her results came back, her levels were where they should be and it looked like we were going home that night! We couldn't be happier - the last couple days Evelyn refused to nap so we were anxious to get home to our own beds. Evelyn's hemoglobin was still low (at 70) and because we were going home they wanted to do a blood transfusion to bring those levels up. As mentioned in the previous post Evelyn started on a chemo drug in pill/liquid form that we have to administer for about 10 days at home. We met with the pharmacist to go over the details that come along with this drug - because it is toxic we need to wear gloves, make sure we don't drip it on ourselves and dispose of the syringes at our local pharmacy. This makes us a little nervous but we know how important this is and thankful its only for a couple days. The blood transfusion started at about 5:00pm and finished around 8:00pm. Evelyn's port needle was taken out and we were free to go. Walking out of the hospital Evelyn seemed to know where we were going, she was so excited! She sang and screamed for joy most of the way home then crashed and slept all night.
It has been such a whirlwind these last 5 weeks - it feels like just yesterday we flew to MacMaster late at night we so may fears and now we sit here at home having come through the most aggressive phase of treatment. And our lion is still going strong and staying healthy . Our Heavenly Father has turned His face toward us and showed us His unending grace, unfailing love and mercy throughout all of this. There has been a lot of ups and downs (and more to come I'm sure) but no matter what we can know we can turn to Him - such a comfort. Thank-you again to everyone that has helped in their own way in these last 5 weeks - everything has been SO appreciated! Here are just a few more pictures from the week.
Just enjoying the car ride..
Then realizing where we were going :)
It has been such a whirlwind these last 5 weeks - it feels like just yesterday we flew to MacMaster late at night we so may fears and now we sit here at home having come through the most aggressive phase of treatment. And our lion is still going strong and staying healthy . Our Heavenly Father has turned His face toward us and showed us His unending grace, unfailing love and mercy throughout all of this. There has been a lot of ups and downs (and more to come I'm sure) but no matter what we can know we can turn to Him - such a comfort. Thank-you again to everyone that has helped in their own way in these last 5 weeks - everything has been SO appreciated! Here are just a few more pictures from the week.
Breakfast in bed..
Then a little rest
How we passed the time at the hospital - sister visits,
being silly and pretending,
walking the halls or watching cartoons,
eating or playing.
Taking her vitals or helping with blood work.
THE prefect bald head - just precious :)
Lindsey and Stephen
2 Corinthians 1:7 "And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort."
Sunday 22 September 2013
September 22 - Day 33
Just a short post to say - we made it through! :) Around lunchtime yesterday Evelyn finished her 24hr chemotherapy. We both took a sigh of relief and said a short prayer of thanks. The treatment went well and we had no problems with her port needle. The nurses stayed on top of the anti-nausea meds so Evelyn would feel comfortable. She seemed a little more tired and sore but other then that she seemed okay. The next step is to flush her system of the chemo, running calcium leukovorin through her IV for about two days. The nurse takes blood every six hours to check her levels; once her system is free of chemo we hopefully get to go home. They are also weaning her off her steroids, blood pressure meds and her acid reflux med. And on Tuesday she will start up on another antibiotic which is given three days a week. We have a little fighter on our hands. She has always been a feisty, strong-willed girl but neither of us knew how strong until this happened :). We have no doubt Evelyn will push through the rest of treatment and put up a fight until the very end - she has so may cheerleaders and a God who will always hold her up.
Lindsey and Stephen
Ps 86: 15 "But you, Lord, are a compassionate and gracious God, slow to anger, and abounding in love and faithfulness."
Friday 20 September 2013
September 20 - Day 30
I just wanted to give everyone a quick update on the results of the last test. This morning it was confirmed 100% that Evelyn is in remission!! :) :). Praise the Lord!! We are over the moon excited and cried a lot of happy tears. We are so thankful to God for bringing us to this point, He has kept Evelyn in His care and given her the strength to fight these last four weeks. Treatment continues as planned and will for the next two years. If she wasn't in remission she would have to go through radiation and/or multiple blood transfusions with a lot of unknowns. If all goes well this weekend next week we will be discharged and come back weekly as outpatients. Today Evelyn started her 24 hour chemotherapy - given through IV. The nurses are keeping a close eye on her because of her previous troubles with her port needle and are staying on top of her anti-nausea medications to help keep her comfortable. She is also starting a chemo in pill form (crushed and put through her NG tube) that will be given for 14 days. We suspect she will be feeling pretty lousy and tired the next couple days. Please continue to keep Evelyn in your prayers as we jump this last hurdle and hopefully be able to return home next week.
Lindsey and Stephen
Ps 115:1 "Not to us, Lord, not to us but to your name be the glory. Because of your love and faithfulness"
Lindsey and Stephen
Ps 115:1 "Not to us, Lord, not to us but to your name be the glory. Because of your love and faithfulness"
Thursday 19 September 2013
September 19 - Day 30
Last night we arrived at the Ronald McDonald House around 7:30pm, checked in then walked over to the hospital.
We got familiar with our room and numbing cream was put on Evelyn's port so her needle could be inserted. Half an hour later her IV was in and blood was taken. She was so tired she cuddled up in bed with her blanket and lion and slept the night away.
This morning came with high hopes that Evelyn would get in early for her lumbar puncture and biopsy since she had been fasting all night but they were running behind - she finally was able to go at 11:00am. The procedure went quick and we were back in our room by 12:00.
Evelyn was starving by the time she came around - she finished two bottles, a hamburger and fries in no time! The steroids have increased Evelyn's appetite dramatically - she can almost eat as much as us. The afternoon was a quiet one with Evelyn napping for almost 2 hours.
Around 5:30pm our doctor came in and delivered some GREAT NEWS! Results from Evelyn's biopsy came back and from what they can see her red blood cells are reproducing themselves and there are no lymphoblasts in her blood - all great things that point towards the 'remission' phase. There's one more lab test to confirm 100% but all things look good right now. We are so happy to hear this news and will be even happier when it is confirmed tomorrow. Evelyn has been doing amazing through all of this and we have only our Heavenly Father to thank - He has carried us through and held us up when we were down; given us strength and good health in Evelyn. She will be having her 24 hour chemotherapy and it is known to be pretty intense - we continue to pray and cast our anxieties on Him as we make it through these next couple days.
Lindsey and Stephen
Romans 12:12 "Be joyful in hope, patient in affliction, faithful in prayer."
Playing with the automatic door
At the Ronald McDonald house, unpacking
We got familiar with our room and numbing cream was put on Evelyn's port so her needle could be inserted. Half an hour later her IV was in and blood was taken. She was so tired she cuddled up in bed with her blanket and lion and slept the night away.
This morning came with high hopes that Evelyn would get in early for her lumbar puncture and biopsy since she had been fasting all night but they were running behind - she finally was able to go at 11:00am. The procedure went quick and we were back in our room by 12:00.
Evelyn was starving by the time she came around - she finished two bottles, a hamburger and fries in no time! The steroids have increased Evelyn's appetite dramatically - she can almost eat as much as us. The afternoon was a quiet one with Evelyn napping for almost 2 hours.
Around 5:30pm our doctor came in and delivered some GREAT NEWS! Results from Evelyn's biopsy came back and from what they can see her red blood cells are reproducing themselves and there are no lymphoblasts in her blood - all great things that point towards the 'remission' phase. There's one more lab test to confirm 100% but all things look good right now. We are so happy to hear this news and will be even happier when it is confirmed tomorrow. Evelyn has been doing amazing through all of this and we have only our Heavenly Father to thank - He has carried us through and held us up when we were down; given us strength and good health in Evelyn. She will be having her 24 hour chemotherapy and it is known to be pretty intense - we continue to pray and cast our anxieties on Him as we make it through these next couple days.
Lindsey and Stephen
Romans 12:12 "Be joyful in hope, patient in affliction, faithful in prayer."
Tuesday 17 September 2013
September 17 - Day 28
After a couple quiet days at home, this morning we went to the clinic for blood work and a check up to have everything ready to go for the weekend. Finger poke went much better and quicker this week although Evelyn is starting to remember what happens in what rooms so she wasn't too happy today. We went upstairs to get results and her height and weight recorded. Evelyn's hemoglobin was lower this week then last week and the nurses talked about doing a blood transfusion to bring those numbers up. Since we are being admitted tomorrow night they decided to wait it out and possibly do it tomorrow or Thursday. Evelyn's had a pretty bad diaper rash the last week (from a combination of the chemo and diarrhea). Last week there were a few open sores and the nurses were concerned her chemo treatments would be pushed back - Evelyn's platelets drop while going through chemo causing her to bleed a lot easier so if there are open sores treatment gets delayed. The nurses took a good look at her bum and gave us the good news that treatment will go on as planned. We need to make sure none of those sores come back in the next day. Tonight and tomorrow will be quiet, busy with packing and laundry for the week.
Lindsey and Stephen
Deuteronomy 31:8 "The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
Lindsey and Stephen
Deuteronomy 31:8 "The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
Thursday 12 September 2013
September 12 - Day 23
Today we were scheduled for blood work and another round of chemo. We were all up early and out the door by 7:30 - the clinic is only open in the morning and goes by first come first serve sort of basis so it's best to get there when they first open at 9:00am (earlier if she needs a procedure done).
We headed to the finger poke lab first - they had a hard time getting blood out of one finger so they had to poke a couple more fingers to retrieve enough blood - Evelyn was not a happy camper.
Next, up to the clinic we went. Charlotte came with us this time and made quick friends with the volunteers and the other kids.
Evelyn's blood work came back and her hemoglobin levels were low (70 is considered dangerous; Evelyn's was 80; still low but not bad). The nurses gave us the option of a blood transfusion - because her number was low this is what is done to bring those levels back up. We opted for no transfusion - the nurses recommend doing them if the child is really low energy, preferring to lay down most of the day, out of breath, or having a high heartbeat. About 3-4 days ago Evelyn didn't want to get off the couch or wanted to be held most of the day. Since then her energy has come up and she has been more active around the house - the main reason we said no to the transfusion and why put her through more if it wasn't a necessity. If we notice a drop in her behaviour or big decrease in energy we go back to the hospital for a transfusion. Once that decision was made her port needle was reinserted and her chemo was given. On these more 'normal' visits Evelyn will not be hooked up to an IV - the chemo goes right into her port through a small tube and then the needle gets taken out again. Its a quick process in the clinic and usually takes about 15 minutes. By 11:00 we were on our way home. Our next visit is scheduled for Tuesday - a quick checkup and blood work. Then we will be admitted on Wednesday night for a week. Thursday Evelyn will have another lumbar puncture and bone marrow biopsy with chemo given through IV and also during her lumbar puncture. Friday she starts her 24 hour chemo (chemo running through her IV for 24 hours) and will taper off her steroids, blood pressure medication and the antibiotic she is on. For a couple days after all that they will monitor her to make sure the chemo is out of her system and everything else checks out okay. Day 32 is the end of the first 'phase' of aggressive treatment - we will find out if Evelyn is considered in 'remission' after these last tests. This doesn't mean she is in the clear but if she is in remission she is on the right track with treatment and will continue more routine treatment over the next two years. There is a lot of excitement that comes with Day 32, but with that anxiety and worry too. It will be a busy couple of days with a lot going on and a lot of unknowns. Ultimately we know the Lord is guiding the doctors and nurses hands and we are comforted by that. No matter the outcome our little Evelyn is in His hands. We remind ourselves of this daily and continue to pray for strength to get through these tough times. Here are a few more pictures to end the post :)
We headed to the finger poke lab first - they had a hard time getting blood out of one finger so they had to poke a couple more fingers to retrieve enough blood - Evelyn was not a happy camper.
Next, up to the clinic we went. Charlotte came with us this time and made quick friends with the volunteers and the other kids.
Evelyn's blood work came back and her hemoglobin levels were low (70 is considered dangerous; Evelyn's was 80; still low but not bad). The nurses gave us the option of a blood transfusion - because her number was low this is what is done to bring those levels back up. We opted for no transfusion - the nurses recommend doing them if the child is really low energy, preferring to lay down most of the day, out of breath, or having a high heartbeat. About 3-4 days ago Evelyn didn't want to get off the couch or wanted to be held most of the day. Since then her energy has come up and she has been more active around the house - the main reason we said no to the transfusion and why put her through more if it wasn't a necessity. If we notice a drop in her behaviour or big decrease in energy we go back to the hospital for a transfusion. Once that decision was made her port needle was reinserted and her chemo was given. On these more 'normal' visits Evelyn will not be hooked up to an IV - the chemo goes right into her port through a small tube and then the needle gets taken out again. Its a quick process in the clinic and usually takes about 15 minutes. By 11:00 we were on our way home. Our next visit is scheduled for Tuesday - a quick checkup and blood work. Then we will be admitted on Wednesday night for a week. Thursday Evelyn will have another lumbar puncture and bone marrow biopsy with chemo given through IV and also during her lumbar puncture. Friday she starts her 24 hour chemo (chemo running through her IV for 24 hours) and will taper off her steroids, blood pressure medication and the antibiotic she is on. For a couple days after all that they will monitor her to make sure the chemo is out of her system and everything else checks out okay. Day 32 is the end of the first 'phase' of aggressive treatment - we will find out if Evelyn is considered in 'remission' after these last tests. This doesn't mean she is in the clear but if she is in remission she is on the right track with treatment and will continue more routine treatment over the next two years. There is a lot of excitement that comes with Day 32, but with that anxiety and worry too. It will be a busy couple of days with a lot going on and a lot of unknowns. Ultimately we know the Lord is guiding the doctors and nurses hands and we are comforted by that. No matter the outcome our little Evelyn is in His hands. We remind ourselves of this daily and continue to pray for strength to get through these tough times. Here are a few more pictures to end the post :)
Administering meds with dinner
On our nightly walk and mail check
Lindsey and Stephen
Philippians 4:6-7 "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
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