As humbling as it was to expose myself the other day I am so glad I did. I'm am in such a better place now. I had taken my eyes
off of Jesus and was sinking FAST!!! I'm so grateful for the precious
Holy Spirit, the truth of God's word, and the body of Christ. They have
been my life line. I feel like I've crawled back under the ship to rest
with Jesus...by the grace of God! Hope has returned! Of course It never left. Jesus was with me the whole time! I just looked away temporarily.
Haley continues to struggle after this last chemo treatment. She (and I) are just hanging out in the camper where it is quiet. I've given up on the idea of trying to keep track of how many times she pukes. The last couple of days she was able to keep more in than out. Unfortunately, today I can't say that. She turned her feeding pump off last night. She's thrown up everything that I've tried to give her today. So I switched her to just water and turned her rate down to 15 mls an hour (that's 1/2 an ounce). She's kept that down so far for the last two and a half hours. Perhaps I can increase her rate a bit. I always feel so bad when I do that and then she pukes. This is a balancing act indeed. She really wanted to swim today (there is open swim at the hospital from 4-5). But when it was time to go she wanted to keep sleeping instead.
This is the song that she is listening to over and over and over again. https://www.youtube.com/watch?v=TVsRM55_jsE
Thank you for bearing this burden with us!
Wednesday, June 3, 2015
Monday, June 1, 2015
I almost drowned...The cold hard facts!
Clinic apt 5-20-15. I take all the kiddos with me to give Hannah a break. Haley was admitted for chemo 5-21-15 through 5-24-15. She got a two day break where she almost felt semi-normal except for her tummy hurt and she still didn't have an appetite. Since there was no school on Monday her friend Katie got to come and stay the night with her Sunday night. Our camper started leaking water. And we ended up with no heat because of it. Turns out the hot water heater is bad. After a week or so, Hans was able to get the heat back on, but the hot water heater will have to wait. Another clinic visit on 5-27-15. Another chemo admit on 5-28-15 through 5-30-15. We were discharged around 10:15 PM last night! None of these chemo treatments are a walk in the park but this particular weeks was really awful. It makes Haley feel so terrible. It doesn't seem to matter how many anti-nausea drugs that pump into her. She spends the whole time with her head over the puke bowl. It's really hard to see her suffering. Grandma Debbie had mercy on me and she stayed with Haley for the first two nights. Hans stayed with her the last night.
Today, 6-1-15, Haley has a physical therapy apt at 10 am. Tomorrow she has an apt with the surgeon where we get to tell her the surgery option we are choosing. (I'll save that for a post all it's own. - You are not even going to believe it!) She will not get chemo again for two weeks because this last round that she got will completely wipe out her immune system. They have to wait for it to come back before they give her the next round. In that two week time she will spend 5 of those days at the hospital for 6 different clinic apts. And God willing she will not have to be admitted because of a fever. And hopefully she will feel well enough to spend one of those days at the zoo.
Meanwhile, Hans and I grow more and more distant. I'm feeling like I REALLY need the support of my husband through all of this but he's simply not around. So in an effort to function, I just push him away because I can't rely on him for support. (I know...that's an unhealthy coping mechanism.) He feels stuck with NO good options. So off to work he goes...distant and miserable. If something doesn't change it will be a miracle if our marriage survives. We actually took about 45 minutes last night (thank you Molly & Ella for staying with Haley) to talk and share our frustrations with each other.
This journey has been so hard for me. I would never choose chemo for myself or my children. But here I am, forced to walk this road. And walking down this road without the support of my husband seems like more than I can bear. I feel very much like Peter. Jumped out of the boat and walking on water. And then stink, I looked away! I took my eyes off of Jesus! Now I'm sunk! But praise the Lord, "My flesh and my heart may fail: but God is the strength of my heart, and my portion for ever." Psalm 73:26 I may have sunk, but I won't be drowned. Jesus in Him great mercy, has reached down and saved me...again!
Today, 6-1-15, Haley has a physical therapy apt at 10 am. Tomorrow she has an apt with the surgeon where we get to tell her the surgery option we are choosing. (I'll save that for a post all it's own. - You are not even going to believe it!) She will not get chemo again for two weeks because this last round that she got will completely wipe out her immune system. They have to wait for it to come back before they give her the next round. In that two week time she will spend 5 of those days at the hospital for 6 different clinic apts. And God willing she will not have to be admitted because of a fever. And hopefully she will feel well enough to spend one of those days at the zoo.
Meanwhile, Hans and I grow more and more distant. I'm feeling like I REALLY need the support of my husband through all of this but he's simply not around. So in an effort to function, I just push him away because I can't rely on him for support. (I know...that's an unhealthy coping mechanism.) He feels stuck with NO good options. So off to work he goes...distant and miserable. If something doesn't change it will be a miracle if our marriage survives. We actually took about 45 minutes last night (thank you Molly & Ella for staying with Haley) to talk and share our frustrations with each other.
This journey has been so hard for me. I would never choose chemo for myself or my children. But here I am, forced to walk this road. And walking down this road without the support of my husband seems like more than I can bear. I feel very much like Peter. Jumped out of the boat and walking on water. And then stink, I looked away! I took my eyes off of Jesus! Now I'm sunk! But praise the Lord, "My flesh and my heart may fail: but God is the strength of my heart, and my portion for ever." Psalm 73:26 I may have sunk, but I won't be drowned. Jesus in Him great mercy, has reached down and saved me...again!
Wednesday, May 20, 2015
Two days of sunshine and even a couple of smiles
5-19-15
Haley woke up feeling yucky again. She felt a bit better after she puked. Today we all packed up and headed south to go to Haley's Dr apt with the naturopath. We were going to go on a trail walk after her apt. However, the dr ended up not being there because he was sick. They tried to call and tell me but they only had my home number. So we all played freeze tag on the grass next to the clinic. It was grandma Debbie and myself against Hannah (nanny) and the children. Josiah and Hannah were little helpers. They could not be frozen but they could un-freeze the others if they could be coaxed into tagging their hands. I must say. Grandma Debbie and I conquered (eventually). And man was I sore the next day. (I'm not used to running.)
We ended up going to Costco and eating lunch there. We headed back up to Seattle after that because we wanted to beat the traffic. We were going to walk on the trail that was next to the RMH but ended up just hanging out at the park. There was a dog the kids were playing with. By the end of the day Haley was feeling a bit better. It was so nice that Hannah and I took the kids for a walk after dinner (although we didn't actually leave until almost 8 pm...we are so slow!). We found a park with a playground set on it. Haley even braved the merry-go-round. She had a blast! I was afraid that might make her sick and she would be puking again but she really wanted to try. I figured she was the one that would have to suffer the consequences so I told her to go ahead.
Haley went to bed feeling pretty okay. However, she woke up around 2 AM needing to rush to the bathroom. She didn't quite make it and then she needed to puke. She didn't quite make that into the bucket either. Bummer! She did feel a little better after though. I cleaned up the messes and turned her "feeds" down to just under 2 ounces an hour. Then back to bed I went!
5-20-15
Haley woke up feeling pretty good. She wanted to eat. She hasn't really eaten in a LONG time. But she was ready to eat. Unfortunately, we slept in and ran out of time before we had to be at her clinic apt. I picked up Ashely and Isaac (Elizabeth was already with me) in hopes that Hannah (nanny) could get some studying done while the babies slept. And we were off to clinic. This was a tough day. Although Haley was feeling pretty good. Mentally it was tough. The surgeon came in during the apt and talked about Haley's surgery options. She has three.
1) Amputation (great option for active lifestyle).
2) Internal prostesis (where they remove a significant portion of her femur, knee and a small amount of her tibia and replace it with metal and plastic). This is not a great option for an active lifestyle.
3) I can't remember the name of it but it was the most bizarre by far. They would remove the lower half of her femur, knee and the upper half of her tibia (basically the whole middle part of her leg). Then they turn what's left of her lower leg backwards and reconnect it to her femur. Her heal then would serve as her new knee (with her foot pointed the other way). She would then ware a lower prostetic. SO STRANGE!!! I can see the benefits. But SO STRANGE!!!
Haley doesn't like any of the above options! Who would? While she was processing all of that we were off to the next Dr apt with the naturopath where she got hit with another hard blow. As it turns out Haley has celiac disease (aka gluten intolerance) and a milk allergy. This was enough to bring my little sweetie to tears. She LOVES to eat foods that contain gluten and milk. With everything else that is going on this was just to much! I told her it was okay to cry. We did go on a little walk before we headed back to Seattle.
On a brighter note...Haley has gotten her appetite back. She ate some cantaloupe for lunch and some soup for dinner. She said it felt so good to eat. Unfortunately, she goes back to the hospital for chemo tomorrow. I told her we wouldn't have to check in until the afternoon. That way she could eat breakfast and lunch before she's admitted.
Even with the heavy blows of today there were times I saw a glimpse of my sassy Haley. And her beautiful smile! Thanks for your continued prayer for her protection as we go in for round number three.
Haley woke up feeling yucky again. She felt a bit better after she puked. Today we all packed up and headed south to go to Haley's Dr apt with the naturopath. We were going to go on a trail walk after her apt. However, the dr ended up not being there because he was sick. They tried to call and tell me but they only had my home number. So we all played freeze tag on the grass next to the clinic. It was grandma Debbie and myself against Hannah (nanny) and the children. Josiah and Hannah were little helpers. They could not be frozen but they could un-freeze the others if they could be coaxed into tagging their hands. I must say. Grandma Debbie and I conquered (eventually). And man was I sore the next day. (I'm not used to running.)
We ended up going to Costco and eating lunch there. We headed back up to Seattle after that because we wanted to beat the traffic. We were going to walk on the trail that was next to the RMH but ended up just hanging out at the park. There was a dog the kids were playing with. By the end of the day Haley was feeling a bit better. It was so nice that Hannah and I took the kids for a walk after dinner (although we didn't actually leave until almost 8 pm...we are so slow!). We found a park with a playground set on it. Haley even braved the merry-go-round. She had a blast! I was afraid that might make her sick and she would be puking again but she really wanted to try. I figured she was the one that would have to suffer the consequences so I told her to go ahead.
Haley went to bed feeling pretty okay. However, she woke up around 2 AM needing to rush to the bathroom. She didn't quite make it and then she needed to puke. She didn't quite make that into the bucket either. Bummer! She did feel a little better after though. I cleaned up the messes and turned her "feeds" down to just under 2 ounces an hour. Then back to bed I went!
5-20-15
Haley woke up feeling pretty good. She wanted to eat. She hasn't really eaten in a LONG time. But she was ready to eat. Unfortunately, we slept in and ran out of time before we had to be at her clinic apt. I picked up Ashely and Isaac (Elizabeth was already with me) in hopes that Hannah (nanny) could get some studying done while the babies slept. And we were off to clinic. This was a tough day. Although Haley was feeling pretty good. Mentally it was tough. The surgeon came in during the apt and talked about Haley's surgery options. She has three.
1) Amputation (great option for active lifestyle).
2) Internal prostesis (where they remove a significant portion of her femur, knee and a small amount of her tibia and replace it with metal and plastic). This is not a great option for an active lifestyle.
3) I can't remember the name of it but it was the most bizarre by far. They would remove the lower half of her femur, knee and the upper half of her tibia (basically the whole middle part of her leg). Then they turn what's left of her lower leg backwards and reconnect it to her femur. Her heal then would serve as her new knee (with her foot pointed the other way). She would then ware a lower prostetic. SO STRANGE!!! I can see the benefits. But SO STRANGE!!!
Haley doesn't like any of the above options! Who would? While she was processing all of that we were off to the next Dr apt with the naturopath where she got hit with another hard blow. As it turns out Haley has celiac disease (aka gluten intolerance) and a milk allergy. This was enough to bring my little sweetie to tears. She LOVES to eat foods that contain gluten and milk. With everything else that is going on this was just to much! I told her it was okay to cry. We did go on a little walk before we headed back to Seattle.
On a brighter note...Haley has gotten her appetite back. She ate some cantaloupe for lunch and some soup for dinner. She said it felt so good to eat. Unfortunately, she goes back to the hospital for chemo tomorrow. I told her we wouldn't have to check in until the afternoon. That way she could eat breakfast and lunch before she's admitted.
Even with the heavy blows of today there were times I saw a glimpse of my sassy Haley. And her beautiful smile! Thanks for your continued prayer for her protection as we go in for round number three.
Monday, May 18, 2015
Happy Birthday to Me!!!
Monday 5-18-15
Today the sun is shining. What a special birthday gift for me! I love to see the sun! Haley is sitting with a puke bowl in front of her. And she pretty much stayed that way for the entire day. She did throw up in the morning and again in the evening. Although it was mostly just dry heaving in the evening. There was nothing in her tummy because she felt so sick that she had turned her "feeds" off. She has a pump that feeds her 24/7. It was a lovely day out and we did get a couple of hours out side to enjoy it...even with the puke bucket.
Last night baby Hannah vomited all over in her crib at the RMH. My mom (who was in town for my birthday) said that she was chocking on her vomit and couldn't breathe. That freaked her out. She was able to get to her and turn her over (not caring that puke was getting all over her) and she began to breathe again. But what a mess. Hannah (nanny) was so thankful that my mom was there to help her deal with that horrific mess. It was a doooozy!
Today the sun is shining. What a special birthday gift for me! I love to see the sun! Haley is sitting with a puke bowl in front of her. And she pretty much stayed that way for the entire day. She did throw up in the morning and again in the evening. Although it was mostly just dry heaving in the evening. There was nothing in her tummy because she felt so sick that she had turned her "feeds" off. She has a pump that feeds her 24/7. It was a lovely day out and we did get a couple of hours out side to enjoy it...even with the puke bucket.
Last night baby Hannah vomited all over in her crib at the RMH. My mom (who was in town for my birthday) said that she was chocking on her vomit and couldn't breathe. That freaked her out. She was able to get to her and turn her over (not caring that puke was getting all over her) and she began to breathe again. But what a mess. Hannah (nanny) was so thankful that my mom was there to help her deal with that horrific mess. It was a doooozy!
The rest of round two
Friday 5-15-15
Haley's tummy is so ouchie. She said it doesn't feel nauseous really although she did throw up this morning (all over herself and her special blanket). She said it did feel a little better afterward. Now we get to wait until the chemo is cleared out of her system. Lots of fluid and peeing.
Haley spent all day very uncomfortable. She didn't even want to try and play the guitar when music therapy came to her room. She pretty much just stayed in bed all day feeling crumby.
Elizabeth and Josiah got to spend the day with Haley and I in the hospital. It was so beautiful today. Josiah and I tried to get Haley to go outside on the roof top to feel the sun. But she was not interested in getting out of bed.
Morgan has been staying with Grandma Debbie and today Josiah said, "where's Morgan?" I told him she was with Grandma and he said, "I miss her". Sweet boy! So we spent some time chatting on the phone with Morgan. Hannah (our nanny), started to not feel very well. When Hans got to the hospital after work I headed over to the RMH to relieve Hannah of the children. Hans stayed with Haley and I stayed at the house.
Saturday 5-16-15
Haley puked again this morning. She still feels pretty awful. They started checking the methotrexate level today. She has to have it cleared out of her system before she can be discharged. It was still to high today. She'll continue getting large amounts of fluid and we'll check again tomorrow. She spent the rest of the day in bed. Baby Hannah and Elizabeth got to hang out with her today. Hans took the other children with him to go get a new propane tank and fill our other ones. We ran out (which means no heat in the camper). Hannah (nannay), got to hang out by herself at the RMH and rest. Haley spent a couple of hours by herself in the evening while Hans went after a large tote that we can pump our RV tanks into (so we can use the toilet). And I took the kids back to the RMH to eat some dinner and put them to bed. After they were in bed (with the exception of Hannah, who got a late nap and was not ready to sleep) I took baby Hannah back to be with Haley until Han got back. He stayed over night with her.
Sunday 5-17-15
Hannah (nanny) felt much better this morning. Thank you Lord!!! She took the kids down to get breakfast and I stayed in the room to clean, organize and take a shower. I got word from Hans around 11:30 that Haley's methotrexate level was low enough for her to be discharged. Unfortunately, she is still feeling pretty crumby. By the time I got over to the hospital and we "moved out" it was about 2:30 when we got back to the RMH. Grandma and Morgan had already got there. Today is Morgan's 11th birthday. We had a little party after dinner with brownies, ice cream and presents. Elizabeth, Haley and I headed back to the camper to sleep (Hans was already there sleeping), and Grandma and Morgan stayed at the RMH with the others.
Haley's tummy is so ouchie. She said it doesn't feel nauseous really although she did throw up this morning (all over herself and her special blanket). She said it did feel a little better afterward. Now we get to wait until the chemo is cleared out of her system. Lots of fluid and peeing.
Haley spent all day very uncomfortable. She didn't even want to try and play the guitar when music therapy came to her room. She pretty much just stayed in bed all day feeling crumby.
Elizabeth and Josiah got to spend the day with Haley and I in the hospital. It was so beautiful today. Josiah and I tried to get Haley to go outside on the roof top to feel the sun. But she was not interested in getting out of bed.
Morgan has been staying with Grandma Debbie and today Josiah said, "where's Morgan?" I told him she was with Grandma and he said, "I miss her". Sweet boy! So we spent some time chatting on the phone with Morgan. Hannah (our nanny), started to not feel very well. When Hans got to the hospital after work I headed over to the RMH to relieve Hannah of the children. Hans stayed with Haley and I stayed at the house.
Saturday 5-16-15
Haley puked again this morning. She still feels pretty awful. They started checking the methotrexate level today. She has to have it cleared out of her system before she can be discharged. It was still to high today. She'll continue getting large amounts of fluid and we'll check again tomorrow. She spent the rest of the day in bed. Baby Hannah and Elizabeth got to hang out with her today. Hans took the other children with him to go get a new propane tank and fill our other ones. We ran out (which means no heat in the camper). Hannah (nannay), got to hang out by herself at the RMH and rest. Haley spent a couple of hours by herself in the evening while Hans went after a large tote that we can pump our RV tanks into (so we can use the toilet). And I took the kids back to the RMH to eat some dinner and put them to bed. After they were in bed (with the exception of Hannah, who got a late nap and was not ready to sleep) I took baby Hannah back to be with Haley until Han got back. He stayed over night with her.
Sunday 5-17-15
Hannah (nanny) felt much better this morning. Thank you Lord!!! She took the kids down to get breakfast and I stayed in the room to clean, organize and take a shower. I got word from Hans around 11:30 that Haley's methotrexate level was low enough for her to be discharged. Unfortunately, she is still feeling pretty crumby. By the time I got over to the hospital and we "moved out" it was about 2:30 when we got back to the RMH. Grandma and Morgan had already got there. Today is Morgan's 11th birthday. We had a little party after dinner with brownies, ice cream and presents. Elizabeth, Haley and I headed back to the camper to sleep (Hans was already there sleeping), and Grandma and Morgan stayed at the RMH with the others.
Friday, May 15, 2015
Second Round of Chemo
Haley was pretty tiered Sunday and Monday and was battling a fever. Her
temp was up and down. But thankfully it was only in the zone of needing
to check it every 30-60 minutes and not in the zone of needing to take
her in. She hasn't had an appetite really at all. I'm so thankful for
the NG tube. That is one battle I don't have to fight. I look forward to being able to make all her food but for now she is primarily getting fed a formula. I did make a green
smoothie for her and she didn't even have to taste it. There are
definite perks to an NG tube. Haley was just starting to feel a bit normal again. Her smile was not such a rear thing the last couple of days. Especially when she was playing with her friend Katie (who also happened to bring her two pug puppies that are only four weeks old) who came to visit Wednesday night. It's such a joy to see her beautiful smile. Earlier that day, I took the whole troops (minus Morgan who is with Grandma Debbie) with me to Haley's clinic apt. Isaac and Ashley enjoy spending a couple of hours in the sibling playroom. Elizabeth, Hannah and Josiah hung out with Haley and I in the clinic room. The room always looks like a tornado went through after we are done. The clinic has snacks available that my children take full advantage of.
We are in the process of trying to overcome technical challenges with our camper. Like needing propane (our tanks are the old style) so we can have heat and our holding tanks empties so we can use the toilet and sinks. The silly annoying things that we just can't ignore.
Haley and I did manage to get a shower yesterday (this is a big accomplishment indeed...there is just never a convenient time to take a shower) before she was admitted for her second round of chemo. They started the infusion and almost immediately Haley's tummy began to hurt. She also had some redness appear around her port sight. So they stopped it to get the Dr to come take a look. They wanted to make sure she wasn't having an allergic reaction to this new drug. This one is different than the first one that she got. She will have two weeks of this chemo drug and then repeat the first one again the following week. So Haley will have three weeks in a row of chemo. Being admitted on Thursdays and hopefully discharged Sundays. But that is not my focus. I am just getting through today.
There is so much about this journey that I do not like. Watching my little girl get pumped with "hazardous" toxins and her tummy cramp up. Feeling alone as I care for all aspects of Haley's care by myself while my husband is away at work. Not having any time to connect with my husband. Trying to find parking because our van is to tall to park in the garage. Seeing my babies just want to be with their mommy but they just can't. They don't understand why they have to go to bed with out mommy. Or spend their day with out mommy. Going back and forth from the camper to the Ronald McDonald House. Trying to remember where my keys are and other things that I need. Not really knowing what loose ends I left behind in our house is Graham. Still needing to do things like pay our bills. Forget about filing our taxes for 2014. (Good thing we don't owe any.) Feeling unable to really deal with the disrespect and disobedience of some of my children. It's just flat tough. There are no easy answers. The battle in my mind is raging. The enemy really wants me to focus in on all the things I hate about this journey. So I'm up at 4:30 in the morning (after helping Haley go potty for the third time tonight) unable to go back to sleep. My hope is in Christ. I cling to Him. This song reminds me of the truth. The enemy is defeated in Jesus name. https://www.youtube.com/watch?v=TVsRM55_jsE This has become Haley's theme song. She loves watching this. God is at work in our family. And I trust Him to bring us through. Not because we are so good. But because He is so good!!! Thank you so much for fighting this battle with me in prayer!!! I know in the spiritual I am not alone.
We are in the process of trying to overcome technical challenges with our camper. Like needing propane (our tanks are the old style) so we can have heat and our holding tanks empties so we can use the toilet and sinks. The silly annoying things that we just can't ignore.
Haley and I did manage to get a shower yesterday (this is a big accomplishment indeed...there is just never a convenient time to take a shower) before she was admitted for her second round of chemo. They started the infusion and almost immediately Haley's tummy began to hurt. She also had some redness appear around her port sight. So they stopped it to get the Dr to come take a look. They wanted to make sure she wasn't having an allergic reaction to this new drug. This one is different than the first one that she got. She will have two weeks of this chemo drug and then repeat the first one again the following week. So Haley will have three weeks in a row of chemo. Being admitted on Thursdays and hopefully discharged Sundays. But that is not my focus. I am just getting through today.
There is so much about this journey that I do not like. Watching my little girl get pumped with "hazardous" toxins and her tummy cramp up. Feeling alone as I care for all aspects of Haley's care by myself while my husband is away at work. Not having any time to connect with my husband. Trying to find parking because our van is to tall to park in the garage. Seeing my babies just want to be with their mommy but they just can't. They don't understand why they have to go to bed with out mommy. Or spend their day with out mommy. Going back and forth from the camper to the Ronald McDonald House. Trying to remember where my keys are and other things that I need. Not really knowing what loose ends I left behind in our house is Graham. Still needing to do things like pay our bills. Forget about filing our taxes for 2014. (Good thing we don't owe any.) Feeling unable to really deal with the disrespect and disobedience of some of my children. It's just flat tough. There are no easy answers. The battle in my mind is raging. The enemy really wants me to focus in on all the things I hate about this journey. So I'm up at 4:30 in the morning (after helping Haley go potty for the third time tonight) unable to go back to sleep. My hope is in Christ. I cling to Him. This song reminds me of the truth. The enemy is defeated in Jesus name. https://www.youtube.com/watch?v=TVsRM55_jsE This has become Haley's theme song. She loves watching this. God is at work in our family. And I trust Him to bring us through. Not because we are so good. But because He is so good!!! Thank you so much for fighting this battle with me in prayer!!! I know in the spiritual I am not alone.
Monday, May 11, 2015
Yea though I walk...
Saturday night we attended a dinner auction fundraiser that our church
friends put together. It was an amazing evening!!! We stayed at our
house (in Graham) instead of making the drive back to Seattle. My five
year old daughter woke up screaming in the middle of the night (approx
1:30 AM). After I comforted her and put her back to bed I went and
checked on Haley. She said she wasn't feeling well so I took her
temperature. I was not happy to see that it was 101.4. We took
some blankets off of her and waited about 30 minutes and then checked
it again. 101.8! If Haley's temp ever gets above 100.8 the Dr wants
her to be at the hospital with in the hour. So we decided to leave all
the other sleeping children with the nanny and Hans and I headed north
with Haley. We called them to let them know that we were on our way.
This way we avoid waiting in the "germ filled" waiting area with our
immune compromised girl. They got us back into a room as soon as we got
checked in. They drew blood so they could check her counts and culture
it. I was to sleepy to think about putting the numbing cream over her
port. Oops! While we waited to the lab results to come back they tried
to give Haley Tylenol. She didn't want any so I refused it. And I am
SO glad I did. Over the course of the 3 and a half hours that we were
there her fever broke on it's own. Her lab work looked good. But her
ANC was abnormally high so they wanted to give her a dose of antibiotics
for good measure. I pleaded with them not to. Haley's poor gut is
still suffering from the week of antibiotics that she got last week.
They finally consented to hold off on the antibiotics but if her fever
came back I would need to bring her back for another blood draw. Okay!
So by 7 AM we were at the Ronald McDonald House giving our burning eyes
some relief. Our first ER run done! I glad that's over and praise the
Lord she didn't need to get admitted. Haley and Hans (her daddy)
stayed at the RMH that afternoon while I went and picked up our other
children. It was a long day but I'm so blessed this Mothers Day! I
have seven amazing little world changers. Life certainly hasn't gone in
a direction I would have chosen but never the less God is good. And
He's walking with us every step of the way. Haley is scheduled for a
clinic apt this Wednesday May 13th. And will be admitted May 14th for
round number 2 of chemo. Thank you so much for your prayers,
encouraging words and financial support. This is such a difficult
journey. Psalm 23:4 "Yea, though I walk through the valley of the
shadow of death, I will fear no evil: for thou art with me..."
Wednesday, May 6, 2015
I treasure the moment that Haley looks up at me with teary eyes and says, "I'm so glad you are my mom."
Renewing our minds with TRUTH!!!! as we begin this challenging journey of chemo.
Haley's very first visitors!!! Thanks for your love Beams!!! You are great friends!!!
The one and only day I had to pack up everyone to move to Seattle the next day and I have a sick baby on my hands. This poor girl can not keep anything down.
Smiling faces before the rest of them all got the nasty tummy bug that made them all hurl!! Praise God Hannah (the beautiful nanny) didn't get it.
"Aahhhhh Mmmooommmmm..."
"...my hair!"
Tuesday, May 5, 2015
5-5-15 trying to recap the last 6 days
Sometimes when there is no update that it good news. Unfortunately, this time it's because I've
been so busy going to clinic visits and caring for Haley that I just haven't
had time. I'll try and catch you up to
speed here. It's all kind of a blur actually
as I'm thinking back.
4-30-15
When Haley was not able to keep down her anti nausea
medicine I called the clinic to get her in.
I had Josiah with us (because he stayed the night in the camper). Normally I would push Haley in her wheel
chair and she would push Josiah in his stroller. But Haley’s tummy was bothering her to much
so she was not able to do that. Security
ended up coming over from the hospital to the parking lot where the camper was
parked to help me. I pushed Josiah and
He pushed Haley. It was a LONG day at
the clinic. Haley did not want to
co-operate with getting weighed, etc.
They accessed her port and gave her some anti-nausea meds and
fluids. We (Dr’s and I) decided that it
was appropriate to put an NG tube in (much to Haley’s dismay). She just wasn’t able to drink enough to stay
hydrated. This process Haley was not
looking forward too. I wish I (or the
nurses) would have had the foresight to take Josiah out of the room before we
started. At the first failed attempt
Haley was fighting and screaming and Josiah burst into tears. The child life helper took him out to the
waiting area while we struggled to get the ng tub in. Twice it came out her mouth (oops). She was not making it easy for them. There were two nurses and myself holding
her. The nurse told her she would try
one more time and if she couldn’t get it that Haley would need to be wrapped up
in a blanket. Getting her NG tube in was
a HORRIBLE experience. And Haley was flat
ticked about the whole thing. I left her
in the room to “cool down” while I had the pump training. This was a long clinic day. Poor Josiah at one point was falling asleep
in my lap. We were all exhausted. They went ahead and left the port access in
because she had another apt tomorrow morning at 7:50.
Isaac ended up staying with us in the camper that
night. The other children were with
Hannah (nanny) at the hotel. Haley did
not sleep well and puked often.
5-1-15
Isaac came with us to clinic that day. He had a good time playing in the sibling
play room and then helping himself to the clinic snacks. It was an even longer clinic day then
yesterday. Hannah eventually came and
got Isaac. Haley got blood drawn (out of
her port), fluids, and anti-nausea meds (this time she got Zofran, Benadryl
and reglan) and before all that was over she had spiked a fever. With the combination of a fever and her ANC
coming back as 10 we were on a one way road to admission back into the
hospital. Her ANC needs to be at 200 in
order to avoid admission. I traded
places with Hannah (because Hans never showed up). She stayed with Haley while they were waiting
for a room to be ready and I took the other children with me to the Dr’s
because last night as I was getting ready for bed I noticed bumps on my right
side that reminded me very much like the shingles I had about a year ago. I left Morgan in the Van with Hannah (hoping
she would take a nap – failed attempt) and went in the Josiah, Ashley, and
Isaac. I got the prescription for the
anti-viral. When I opened the door to
the van a monumental wave of poo stench hit me.
During the investigation process I found Hannah with a major blow
out. And I mean major!!! Cleaned her up, tried to get my prescription
(but it wasn’t called in yet), dropped Morgan and Isaac off at the camper
because they were complaining that they didn’t feel well and headed over to the
RMH to get dinner. Only there was no
dinner that night. So back to the camper
we went. I found out Hans went home
because he had a fever and felt terrible.
I was beginning to prepare something to eat and the next thing I know
Isaac is puking all over the floor. I
began to loose it. Morgan sweetly
offered to clean up Isaacs puke and reminded me, “The victory has already been
won Mom!” I traded places with
Hannah. This time Haley was already
admitted into a room. It was after 7 at
this point. My mom drove up to get the
two sickies, Baby Hannah and Isaac and take them back to her house. Little did we know that she should have also
taken Morgan…and Josiah…and Ashley. By
morning Hannah left for home with the rest of the puking children. And Hans
stayed at his moms. And I was with
Haley. WOW!!! This was one brutal tummy bug. Elizabeth
eventually (5-5-15 @ 1 in
the morning) joined in the puking fun!
That makes all 7 of the children!
Meanwhile, Haley’s
numbers continue to go down (not good but was expected as a direct result from
the chemo). She did test positive for
the corona virus (common cold), but all other blood cultures and viruses tested
negative. She started receiving iv
nutrition on 5-3-15 because
she isn’t tolerating her feeds and isn’t eating anything. She had a platelet transfusion on 5-4-15 because her platelets were at a
9. Her ANC dropped all the way to zero. Which means she really has no immune defense. She’s been on antibiotics since she was
admitted. Her tummy has really been
bothering her. It’s been more cramping
than nausea. She’s still on the anti
nausea meds around the clock. She was on
Tylenol around the clock for the first couple of days until I had them back
off. Her temp gets high around 103 but we
are finding that it comes back down on its own.
Unless she is feeling really horrible or her temp reaches 104 we’re not
giving her Tylenol. She bounces back and
forth from feeling uncomfortable and week to feeling really miserable and week. She’s puked a couple of times, had a couple
of baths, and had a lot of diarrhea. Her
feeds (through her NG tube) have slowly increased to 40 mls an hour (that is
just over an ounce). As you can see she’s
not getting much nutrition into her tummy.
So now we hurry up and wait for her fever to go down and stay down, her
ANC to be above 200, and her feeds to go up.
Wednesday, April 29, 2015
4-29-15
Hannah (the nanny), the kids and I worked hard to get everything packed up so we could leave to be at Children's by 1:00. Haley had a clinic apt at 1:10. We left the house a mess. Oh well. Baby Hannah was able to keep a few ounces of milk down and a banana and a few blueberries. I made a dr apt with her naturopath anyway just in case she didn't keep it down and they needed to give her fluids. She hadn't eaten or drank anything (that she didn't promptly vomit up) for two days. Hans ended up taking her and I took Haley to her clinic apt. When I got to the camper Haley was leaning over a puke bowl. She spent the rest of the day like that. Her tummy is just not feeling good today. She would even puke up her anti-nausea medication. At clinic today Haley's nurse was so patient and kind. Haley had a bandage over her port that needed
to come off. The nurse patiently waited
for Haley to take it off by herself. It
took about 45 minutes. The nurse was
praising her and encouraging her as she went. After her clinic visit she spent the rest of the day just laying around in the camper...with her puke bag close by. Hannah took Morgan, Isaac, and Ashley over to the Ronald McDonald House to hang out. I headed over with Josiah later and we ate dinner together. Hannah, Haley and Hans stayed in the camper. I brought food back to them. (For those of you smarty pants that are wondering where Elizabeth is...She stayed home so she could go to her Wednesday night class with her grandma. She'll spend the night at Grandma's and then come up.) Groups come in to cook for the people staying at the house. Very much a blessing. Even if it's not what we would normally eat.
Baby Hannah didn't end up needing to get fluids because she kept her breakfast down. You can tell she doesn't feel good today but she was at least able to keep a little food and water down. Thankfully, no one else but Haley feels sick.
We got a hotel (paid for by the health insurance) to stay in until a room at the RMH opens up. I followed Hannah over to help her get checked in and get the children settled. The room we got smelled terrible...No it was worse then terrible. It was very strong air freshener trying to cover up the smoke smell. I started to get a head ache after just a few minutes. So back down to the front desk with all the kiddos. Josiah was so cold his lips were blue. Hannah only wanted me to hold her. The front desk guy said there were no other rooms. We were turning to leave when another guy said, "I can put in in room ___" So back up to the third floor to pre-smell this room before we bothered moving all our stuff into it. We had to take the stairs this time because the elevator was broken. The new room passed the smell test! YEAH! By this time it was about 8:30. After baby Hannah fell asleep I headed out with Josiah to go back to sleep in the camper with Hans and Haley. I am falling asleep while I'm typing so this is all your going to get for now.
Baby Hannah didn't end up needing to get fluids because she kept her breakfast down. You can tell she doesn't feel good today but she was at least able to keep a little food and water down. Thankfully, no one else but Haley feels sick.
We got a hotel (paid for by the health insurance) to stay in until a room at the RMH opens up. I followed Hannah over to help her get checked in and get the children settled. The room we got smelled terrible...No it was worse then terrible. It was very strong air freshener trying to cover up the smoke smell. I started to get a head ache after just a few minutes. So back down to the front desk with all the kiddos. Josiah was so cold his lips were blue. Hannah only wanted me to hold her. The front desk guy said there were no other rooms. We were turning to leave when another guy said, "I can put in in room ___" So back up to the third floor to pre-smell this room before we bothered moving all our stuff into it. We had to take the stairs this time because the elevator was broken. The new room passed the smell test! YEAH! By this time it was about 8:30. After baby Hannah fell asleep I headed out with Josiah to go back to sleep in the camper with Hans and Haley. I am falling asleep while I'm typing so this is all your going to get for now.
4-28-15
Today was the day I was supposed to pack up and move to Seattle. I have been able to hold it together emotionally through this first round of chemo. No doubt in my mind that my stability is a direct result of the body of Christ bearing this burden with me. You have cried for me so I could be strong! Today however a wave of being overwhelmed washed over me and the tears began to flow. It didn't take to long before I was back on my feet...packing things up. I found someone to cat sit and plant sit for us (for the next 8 months) and by the end of they day they were out of the house. A friend came over and helped tidy up and she even gave my boys hair cuts. Haley was feeling pretty nauseous but she was actually up (in her wheel chair) and I even saw her smile for the first time in several days. That was so good to see. Haley took a shower and I helped her take her dressing off (much to her dismay). Her skin is super sensitive on her right side where they put the port in. After her shower he headed up to Seattle to stay in the camper with her daddy. We thought it would be best for her to get away from her baby sister (almost 2) who had a fever and could not keep anything down. Not even an ounce of water. It's really hard to get a lot done with a sick baby. The bottom line is...we will be making many trips back to finish the move up to Seattle.
Tuesday, April 28, 2015
Day of Discharge
4-26-15
Day of discharge
At rounds this morning the dr agreed to take her off of ativan. That is the drug that makes her feel groggy and weird. She doesn't like it. So hopefully in a couple of hours that will be out of her system so she doesn't feel that way anymore. She had a drug scheduled at 3 today. The purpose of it is to help her body replenish the white blood cells that have dropped from the chemo. Since she will be at clinic tomorrow the dr said she could just get it there so it doesn't hold us up from discharging today. I really want to go home today. I'm missing my other children...and they are missing their mama. Grandma mentioned Hannah missing me and Josiah (age 3) said, "miss mom and dad too". Sweet boy! Currently at 11:30 she is free to go. We are just waiting for her to wake up.
Haley has a clinic apt tomorrow, Wednesday and Friday and next week she'll have it Monday and Wednesday. We are currently on the Ronald McDonald House waiting list. I've yet to figure out a good plan of how to make the move.
Haley slept and slept and slept. We didn't end up leaving until after 3. Haley was to sleepy. She probably would have chosen to sleep but they needed the room. We were going to stay in Seattle with Haley since she had a clinic appointment tomorrow. But I couldn't stand the thought of being away from my other children any longer. The older ones would have been alright but the littlest really wanted their mom and day. This time away hit Hannah the hardest I think. She cried...no...it was more like sobbed as Hans and I held and cuddled her on the couch. She did that for quite a long while. I've never seen her like that before. I was so glad to be home. Especially good to sleep in my own bed!
Haley was far from her normal perky, happy self. She came in the house and laid down. Not wanting any interaction from siblings and not even answering my questions with words, but head nods. It's so hard to see her like this. Morgan slept on the couch to be her "nurse" if she needed anything in the middle of the night. Haley's been sleeping in the living room since we found out about the tumor. It's took challenging for her to climb the stairs and certainly climbing up to the top of the triple bunk bed. Although, the nurse said she can walk again, Haley is not interested in doing so. She is afraid that it will make her leg hurt again. She was having a lot of pain before she stopped using it. Her pain in minimal now and she doesn't want it to get bad again. So she continues to use the wheel chair exclusively.
Monday, April 27, 2015
Clinic
4-27-15
First clinic visit after chemo
First clinic visit after chemo
The dr finally called me in for back up to get Haley weighed. I ended up picking her up and standing next to her on the scale in order to make it happen. Then they just subtracted my weight. About 2/3rds of the way through the apt the nurse told me that the clinic got a call from the playroom where the other children were with Hannah (the nanny). They informed her that baby Hannah (not quite 2) had just vomited. NICE!!!! Haley (understandably) did not want me to leave to go deal with the situation so the social worker went down to give direction. I had Hannah take the three youngest (Ashley -5, Josiah - 3, and Hannah 21 months) to hang out in our 5th wheel camper that was set up in the parking lot and the three older (Elizabeth - 12, Morgan - 10, and Isaac - 7) she would bring back upstairs to be with Haley and I in the clinic room. After a couple more screaming sessions, (and a whole lot of snacks) she had received her fluids and we were on our way to check on the littles.
*Funny rabbit trail story - Isaac was in the bathroom. Which happened to be just right across the hallway from the room Haley was in. I kept hearing nursing asking someone, "are you alright". It finally dawned on me that while he was going to the bathroom he pushed the help button. So the light was blinking outside of the bathroom and a little alarm (beep) was going off. He couldn't figure out why no one would let him go to the bathroom in peace. We all (except for Haley who wasn't in a laughing mood) got a good laugh out of it.
Anyway, by this time it was 5:45ish. There was no way I wanted to battle traffic to get home. I had endured enough battle today. So we just hung out. Baby Hannah was wanting to eat. I reluctantly gave in to her request. I took the kids for a walk. The weather was absolutely gorgeous. We stopped by the Ronald McDonald House. The kids wanted to look around their soon to be new home. The wonderful friendly staff loaded us up with three bags full of snacks and drinks. And we got a purple bracelet that will allow us to have access as "day use" guests. We can do laundry, use the kitchen and even join them for special events. Things started to go down hill when Josiah started complaining that his tummy felt sick. Back to the camper we went. Just in time to get baby Hannah inside right before she vomited for the third time today. Okay! Time to go home!
We will return again soon however. The nurse informed me that Haley must be moved to Seattle by Wednesday. It's simply not safe for her to be so far away from the hospital. She could get a fever and go down hill very fast. And she MUST be close! Okay then...Not sure what that is going to look like...especially in light of the tummy trouble. Josiah rode home with a puke bowl close by. Hannah vomited again in her car seat on the way home. And Ashley took a puke bowl with her to bed. Life is full of surprises. What ever would I do with out my blessed nanny?
P.S. The nurse didn't arrange for an NG tube to be placed. Manly because it had gotten to late and the folks that do that had already gone home for the day. But if Haley can't drink enough then that will undoubtedly end up happening.
Sunday, April 26, 2015
Day 2 of chemo
Haley pretty much doesn't want to have anything to do with nurses or doctors or any other person from the hospital. She puts her head down and doesn't respond to them. Today is day 2 of chemo. We are so very thankful that she has not experienced nausea/vomiting. Cisplatin (one of the chemo drugs they are giving her this round) is notorious for causing that. Praise God!!! The drugs they are giving her to off set the nausea/vomiting are making her very groggy and she has slept most of today. But i suppose that is better than the alternative. Yesterday was full of different "teachings". I met with nutrition, pharmacy and a transition nurse. It was a full day of teaching with Haley's first day of chemo on top of that. I'm so grateful my mom was with us. She was able to tend to Haley while I was in all the teachings. There was more teaching today but not as much. It's important for us to learn how to care for our now immune compromised daughter. For example, if she gets a fever over 101 than we have to take her to the ER with in the hour.
Hans (Daddy) was able to bring the camper and get it all set up in the parking lot of Childrens. When he came into the room and sat next to Haley she began to cry. She'd been through a whole lot since she saw her daddy and she couldn't even tell him about it so she showed him how she felt about it. Which in turn made daddy cry. It was sweet.
Last night Hans and I slept in the camper and grandma stayed with Haley. It felt so good to sleep. The "bed" (I use that term lightly) in the room is terribly uncomfortable. Haley was still sleeping when I got to her room. Grandma said she did great. She had to get up every two hours through out the night to pee. The wake her up to do this. From what I understand, she needs to do this to protect her kidneys from the extreme toxicity of the chemo drugs. * Sarcasm warning * I just love the warning sticker posted on the outside of Haley's room. It says HAZARDOUS DRUG PRECAUTIONS start date 4/24/15. The nurses suite up with gloves, gowns, and masks with eye shields to hook her up and also to dump her pee. And yet we are injecting this hazardous drug right into my baby's blood stream. These drugs that are known to cause cancer. It makes NO SENSE to me. I'm so grateful that the God I serve is bigger then these hazardous drugs!!! And my hope is in Him alone.
Haley did wake up to eat breakfast. She hung out with her daddy while grandma and I went to the airport to pick up Hannah (the nanny). We came back and had lunch with Haley but by this time Haley was so sleepy we fell asleep with her lunch still in hand. She slept pretty much the rest of the day. When she woke up around 7 pm she complained of her tummy being upset and she didn't want to eat dinner. After she had a bm she felt a bit better but was still very out of it. We had about an hour of major drama over her ID bracelet. Poor little sweetie. She does not like what is happening. Sometimes she choose to make huge deals about the silliest things. I suppose she is just trying to get control where she can. In an attempt to distract I played a dice game with Haley for a little while. Even in her groggy state she won!
Hans (Daddy) was able to bring the camper and get it all set up in the parking lot of Childrens. When he came into the room and sat next to Haley she began to cry. She'd been through a whole lot since she saw her daddy and she couldn't even tell him about it so she showed him how she felt about it. Which in turn made daddy cry. It was sweet.
4-25-15
Day 2 of Chemo
Last night Hans and I slept in the camper and grandma stayed with Haley. It felt so good to sleep. The "bed" (I use that term lightly) in the room is terribly uncomfortable. Haley was still sleeping when I got to her room. Grandma said she did great. She had to get up every two hours through out the night to pee. The wake her up to do this. From what I understand, she needs to do this to protect her kidneys from the extreme toxicity of the chemo drugs. * Sarcasm warning * I just love the warning sticker posted on the outside of Haley's room. It says HAZARDOUS DRUG PRECAUTIONS start date 4/24/15. The nurses suite up with gloves, gowns, and masks with eye shields to hook her up and also to dump her pee. And yet we are injecting this hazardous drug right into my baby's blood stream. These drugs that are known to cause cancer. It makes NO SENSE to me. I'm so grateful that the God I serve is bigger then these hazardous drugs!!! And my hope is in Him alone.
Haley did wake up to eat breakfast. She hung out with her daddy while grandma and I went to the airport to pick up Hannah (the nanny). We came back and had lunch with Haley but by this time Haley was so sleepy we fell asleep with her lunch still in hand. She slept pretty much the rest of the day. When she woke up around 7 pm she complained of her tummy being upset and she didn't want to eat dinner. After she had a bm she felt a bit better but was still very out of it. We had about an hour of major drama over her ID bracelet. Poor little sweetie. She does not like what is happening. Sometimes she choose to make huge deals about the silliest things. I suppose she is just trying to get control where she can. In an attempt to distract I played a dice game with Haley for a little while. Even in her groggy state she won!
Friday, April 24, 2015
The official journey begins
Yesterday Haley got her port put in. The surgery wasn’t until noon (or
at least that is when it was scheduled for). Her spirits were up while
we waited. She was relieved to know that they were going to give her gas
to put her to sleep before they put the IV in.
She HATES to be poked. She ended up needing to be poked the day before at clinic for a blood draw. But this smart mama (knowing her intense dislike to pokes) had gotten a prescription for the numbing cream. So I had both hands and arms creamed up with the special tape that the hospitals use. Although she didn’t want to admit it, she did not feel a thing! That was nice. Anyway, back to yesterday, because she had the chicken pox three weeks ago her surgery start time was delayed. Finally, a veteran doc came in to take a look at Haley to determine if she may still be contagious. He said she wasn’t so we could go ahead and get started with out having to prep the OR. While we waited I was showing her all the video clips I had on my camera (mostly her baby sister Hannah being very cute). The allowed me to suit up and go back to the OR with her as she fell asleep. My mom was with me since Hans (my hubby) had to work. We waited and waited and waited and finally got word that Haley was in a room. They were supposed to call me so I could be with her after she started waking up. Oops! When we got to the room Haley was quite upset. It took a couple of hours for her to calm down and rest. But by the end of the day she was eating (the food I brought) and drinking and watching movies. She even gave me a little smile when I took her picture. I’ll see if I can’t figure out how to post it. Today she will have her first treatment of chemo. But before they do that they spend two hours giving her a ton of other drugs to help with the side effects of the chemo. I’m going to be talking to the dr about allowing her to use some of the natural things I brought (that so many people have used successfully to combat the nausea and vomiting when doing chemo) instead of so many of the drugs. We shall see how that goes. At the present she is sleeping peaceably. The plan is for Hans (daddy) to come with the camper after work to park in the parking lot.
 |
| being silly |
 |
| NO MORE PICTURES!!! |
She HATES to be poked. She ended up needing to be poked the day before at clinic for a blood draw. But this smart mama (knowing her intense dislike to pokes) had gotten a prescription for the numbing cream. So I had both hands and arms creamed up with the special tape that the hospitals use. Although she didn’t want to admit it, she did not feel a thing! That was nice. Anyway, back to yesterday, because she had the chicken pox three weeks ago her surgery start time was delayed. Finally, a veteran doc came in to take a look at Haley to determine if she may still be contagious. He said she wasn’t so we could go ahead and get started with out having to prep the OR. While we waited I was showing her all the video clips I had on my camera (mostly her baby sister Hannah being very cute). The allowed me to suit up and go back to the OR with her as she fell asleep. My mom was with me since Hans (my hubby) had to work. We waited and waited and waited and finally got word that Haley was in a room. They were supposed to call me so I could be with her after she started waking up. Oops! When we got to the room Haley was quite upset. It took a couple of hours for her to calm down and rest. But by the end of the day she was eating (the food I brought) and drinking and watching movies. She even gave me a little smile when I took her picture. I’ll see if I can’t figure out how to post it. Today she will have her first treatment of chemo. But before they do that they spend two hours giving her a ton of other drugs to help with the side effects of the chemo. I’m going to be talking to the dr about allowing her to use some of the natural things I brought (that so many people have used successfully to combat the nausea and vomiting when doing chemo) instead of so many of the drugs. We shall see how that goes. At the present she is sleeping peaceably. The plan is for Hans (daddy) to come with the camper after work to park in the parking lot.
Friday, April 17, 2015
E-mail update
Haley, grandma Debbie & I met with the oncologist
from Mary Bridge today. Haley liked him better than the oncologist at
Childrens. (I think that is primarily because she heard the diagnosis
from the Seattle oncologist first.) Never the less Mary Bridge is a
MUCH smaller hospital so Haley would have more consistent interaction
with the dr there. Instead of the rotating shifts of residence at
Childrens. There are certainly pros and cons to both locations. We
are heavily leaning toward Mary Bridge at this moment. The treatments
are the same at both locations. Haley's surgery (at 10-12 weeks in)
will have to be at Childrens. They don't do that at Mary Bridge.
The
oncologist is pushing HARD to get her started on treatment early next
week. Haley has an appointment Monday with an ND at the Tahoma Clinic.
He wants to get some tests done before she starts treatment to get an
idea of why she got cancer in the first place. This information will
help him to know how to support her during this chemo time and after.
He strongly believes that if the reason she got cancer isn't dealt with
it will come back. If that happens, it comes back even meaner and
uglier than before. Cancer is just a symptom of a body that is not
functioning properly. Simply killing the cancer is not enough. Please
pray with me that God would allow enough time for the ND to get all the
tests he needs done before they force us to start chemo. I say force
because there are other clinics (in other states) that offer other
treatments. That would be our first choice. But my friends, in this
state, parents do not have the right to make such decisions for their
children. Both hospitals have made it very clear that if we pursued
other treatments they would be "obligated" to call CPS on us for medical
neglect. This is nothing short of medical tyranny. But God is good
and He has prepared us for this battle. And He is fighting for us. He
is our Rock. Our hope. Our salvation. And we praise Him.Undoubtedly, Haley will have started chemo by this time next week. Thankfully, my hormones have evened out and I am able to be strong (in the Lord) once again and fight this battle with out constant tears. In fact, I started feeling that strength only a few hours after I sent out the last e-mail. God is answering your prayers mighty warriors! Thank you (doesn't seem adequate) for holding my arms up!
P.S. A friend gave Haley $10 to buy herself a gift for being so brave at her apt on Monday. (it was quite traumatic for her) She said she wanted to buy a baby chick. (Our local feed stores are advertising that "chicks are in") Well don't you know...We have two chicks, in a tote, in our living room getting LOTS of love! This will be a weekend affair. Monday we will take them to one of my friends that has chickens and donate them to her flock. What a weekend thrill for Haley. ...oh the things we do for our little ones!
Sunday, April 5, 2015
God is good...all the time!!!!
When we lived in Michigan I read a book called "the detox book" by Bruce Fife. That booked opened my eyes to the fact that all these degenerative diseases (the majority of the time) are preventable. Thus my journey of taking better care of my body and my family. Avoiding things like artificial color, preservatives, and processed food. I started making my own bread and food from scratch. In doing so I lost 45 pounds in five months. I wasn't even trying to loose weight. I was just trying to get healthy. Along the way I met several people that shared with me their story about how they changed their lifestyle and were now cancer free with out doing chemo or radiation. That really got me thinking. If people can be healed from cancer with out doing chemo why in the world aren't more people doing it? In the mean time, I'm watching loved ones suffer and die after being treated with chemo and radiation. Heart wrenching!!! At that point I had determined that if I was ever diagnosed with cancer I would not turn to conventional treatment for help. However, I really didn't have a clue as to what I would do. I saw a book called, "cancer step outside the box" by Ty Bollinger. It took me a couple of years but I finally bought the book and read it. That was March of 2014. Interestingly, that was the beginning of a series of trials that seemed to get more and more intense. April 2014 Hans was in a car accident. Just as life seemed to be getting back into a groove our three year old son Josiah fell in the kitchen and broke his left femur. (He has stability issues because of a stroke that he had during one of his heart surgeries when he was three months old.) He was taken into surgery and had a spika cast (both legs casted) put on him. He had the cast on for five weeks. After he got the cast off it took him six weeks to even show interest in wanting to walk again. Just when I felt like my sanity was slowly returning another wave crashes down on our family. Hans was diagnosed with an inverted papilloma (tumor) in his sinuses. Praise the Lord it was not malignant (cancerous). Never-the-less, I felt compelled to continue studying and researching alternative cancer treatments. We were happy to say farewell to 2014. And we looked forward to a much less medically challenged 2015.
Late January 2015 Haley began to have pain in her right knee. We thought she may have injured herself roller blading. By Mid February we had told Haley that she is not allowed to roller blade anymore (much to her dismay).
Late February, with the encouragement of a friend, I joined heritage defense. It felt good to know that if I ever got a knock on my door from CPS that I would be able to call an attorney 24/7.
I've never been one to rush to the Dr for myself or my children. However, I made all my children well child check ups with a naturopath in Seattle. March was full of appointments with the new naturopath clinic. Haley's appointment was March 4th. Of course we asked the dr to take a look at Haley's leg. She wrote her a script to get an x-ray. We were going to try some enzymes for a week first to see if that helped. When she did not find any relief with the enzymes Hans took her in to get an x-ray. That was March 14th. March 15th we got a call from the Dr telling us that something was terribly wrong with Haley's leg. It was either a bad infection or cancer and we needed to take her to the ER right away. That is easier said then done. We began to pack and make arrangements for our other 6 children. Both grandpa's were recovering from physical ailments of their own which made the grandma's unavailable. Grandma Debbie ended up coming over to stay with the kids and help get them packed while our pastor and his wife made their way over to pick the kids up and take them to their house for however long.
We opted to take Haley to Seattle Children's Hospital. She was admitted that day. She had an MRI done that night and they told us Haley had a tumor in her femur that looked very much like cancer. She was able to have a biopsy the next day. The initial pathology report was not conclusive as to what type of cancer it was, but they could tell us it was indeed cancer. At this point we had not told Haley about the cancer. We didn't want to bring needless worry just in case it happened to be an unusual infection. But now we were faced with the unpleasant job of telling Haley what was really going on. We read her the story in Mark 4:36-39 of Jesus sleeping in the bottom of the boat, resting his head on a cushion. Meanwhile, his disciples thought they were going to die because of the fierceness of the storm. They wake Jesus up and Jesus rebuked the wind and told the waves to be still and then all was calm. We, like the disciples, found ourselves in a boat with a fierce storm all around us. But we chose to go below and rest our heads on the cushion with Jesus! He is in control and we trust Him!
They let Haley go home Tuesday, March 17th. She was in quite a bit of pain from the biopsy and was nervous about having her siblings around. After making a tape barrier we welcomed the other children home that same night. I was very careful what I fed Haley. I did not want to feed the cancer. So ALL processed sugar was out as well as refined foods and breads. I began to re-explore the different protocols I had learned about that past year. We began to give Haley different supplements to help strengthen her immune system and kill the cancer. And of course, we began to petition the Creator of Haley's for a miracle. God has made our bodies so wonderful. If we give them what they need they will heal themselves. The tricky part is figuring out what they need.
March 20th Haley, Grandma Jan, Hans and I headed once again to Seattle to meet with the oncologist to get the final pathology results. The other children spent the day with a dear friend of mine. The oncologist told us that the pathology report came back and Haley was diagnosed with osteosarcoma. Osteosarcoma makes up only 3% of all childhood cancers. Their treatment plan would be giving Haley 10 weeks of chemo, then surgery to remove her bone, followed by another 18 weeks of chemo. When I asked the dr what caused this and if there was anything we could do to prevent it from coming back, his answer was, "it's just a fluke thing, and there is nothing (outside of their treatment plan) that we could do to prevent it from coming back."
Late January 2015 Haley began to have pain in her right knee. We thought she may have injured herself roller blading. By Mid February we had told Haley that she is not allowed to roller blade anymore (much to her dismay).
Late February, with the encouragement of a friend, I joined heritage defense. It felt good to know that if I ever got a knock on my door from CPS that I would be able to call an attorney 24/7.
I've never been one to rush to the Dr for myself or my children. However, I made all my children well child check ups with a naturopath in Seattle. March was full of appointments with the new naturopath clinic. Haley's appointment was March 4th. Of course we asked the dr to take a look at Haley's leg. She wrote her a script to get an x-ray. We were going to try some enzymes for a week first to see if that helped. When she did not find any relief with the enzymes Hans took her in to get an x-ray. That was March 14th. March 15th we got a call from the Dr telling us that something was terribly wrong with Haley's leg. It was either a bad infection or cancer and we needed to take her to the ER right away. That is easier said then done. We began to pack and make arrangements for our other 6 children. Both grandpa's were recovering from physical ailments of their own which made the grandma's unavailable. Grandma Debbie ended up coming over to stay with the kids and help get them packed while our pastor and his wife made their way over to pick the kids up and take them to their house for however long.
We opted to take Haley to Seattle Children's Hospital. She was admitted that day. She had an MRI done that night and they told us Haley had a tumor in her femur that looked very much like cancer. She was able to have a biopsy the next day. The initial pathology report was not conclusive as to what type of cancer it was, but they could tell us it was indeed cancer. At this point we had not told Haley about the cancer. We didn't want to bring needless worry just in case it happened to be an unusual infection. But now we were faced with the unpleasant job of telling Haley what was really going on. We read her the story in Mark 4:36-39 of Jesus sleeping in the bottom of the boat, resting his head on a cushion. Meanwhile, his disciples thought they were going to die because of the fierceness of the storm. They wake Jesus up and Jesus rebuked the wind and told the waves to be still and then all was calm. We, like the disciples, found ourselves in a boat with a fierce storm all around us. But we chose to go below and rest our heads on the cushion with Jesus! He is in control and we trust Him!
They let Haley go home Tuesday, March 17th. She was in quite a bit of pain from the biopsy and was nervous about having her siblings around. After making a tape barrier we welcomed the other children home that same night. I was very careful what I fed Haley. I did not want to feed the cancer. So ALL processed sugar was out as well as refined foods and breads. I began to re-explore the different protocols I had learned about that past year. We began to give Haley different supplements to help strengthen her immune system and kill the cancer. And of course, we began to petition the Creator of Haley's for a miracle. God has made our bodies so wonderful. If we give them what they need they will heal themselves. The tricky part is figuring out what they need.
March 20th Haley, Grandma Jan, Hans and I headed once again to Seattle to meet with the oncologist to get the final pathology results. The other children spent the day with a dear friend of mine. The oncologist told us that the pathology report came back and Haley was diagnosed with osteosarcoma. Osteosarcoma makes up only 3% of all childhood cancers. Their treatment plan would be giving Haley 10 weeks of chemo, then surgery to remove her bone, followed by another 18 weeks of chemo. When I asked the dr what caused this and if there was anything we could do to prevent it from coming back, his answer was, "it's just a fluke thing, and there is nothing (outside of their treatment plan) that we could do to prevent it from coming back."
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