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View Full Version : Update on Douwe, don't know what to think......



Klasien
July 29th, 2012, 04:20 AM
Dear friends,

Another update on my brother Douwe, he has been through so much the last couple of weeks, last week the bone marrow aspirate was good, he was leukemia free! But his body was not making any cells at that time so the doctors wanted to wait another week to check again.........I hate it when doctors want to wait.........
Anyway, he got trouble with a thing the doctors build in his body to get easy acces to blood and chemo.....I'll try to explain in my best english and maybe use Google translate a little..........(cheating ;))

This past week was the pain where his subcutaneous infusion is intense and this was going to ignite so bad that the surgeon removed it last friday at the beginning of the evening. The pain is therefore happy reduced but Douwe has got a fever, witch is not good.
Also plays his lower right leg unfortunately again. His lower leg is swollen so bad.
Douwe is given antibiotics for several days to get rid of the infection. The doctor expects that the fever will go down tomorrow
The good news is that Douwe his blood levels are rising!
It's just not clear when the bone marrow puncture will take place next week. We remain confident that the outcome of the next bone marrow aspiration will be good.

I don't know what to think......when I read the update I was first afraid, later on in the mail I was happy.....when I was reading it again my thought was: I am so glad his blocks are on its way..........will he be good, will he be sick again and in need of another chemo??
I just don't know.
I don't sleep and spend all my time at the salon and if I am not working I am sewing.......last night (it is morning here now) I have slept for 15 min........... I just can't relax anymore it seems.

So to sum it all up: I am very tired and should take some rest, but my mind is not willing to stop thinking........he needs all the prayers and good thoughts he can get, I still feel so blessed to be able to type on and on and all my dear quilting friends will read it patiently! Thanks for being there!!

Have a great sunday and enjoy every minute!

Carpe Diem!!!!!!!!!

(((HUGS))) to all of you!!

krissyg
July 29th, 2012, 05:27 AM
Sorry your brother isn't feeling too good right now, but this sounds pretty typical for the bone marrow transplant process. When you think of it - they have destroyed his immune system with the chemo, so infections and fevers are pretty common. I'm the one whose husband went through this, and I can tell you he had many fevers. He was lucky and never had an infection in his central line, but he did go through many ups and downs along the way. What's important is that they are monitoring him carefully and responding with the appropriate treatment for all the complications he might have. It's good that his blood counts are starting to come back - my husband's never did recover after the first chemo. I know it's hard not to worry, but I think the problems you describe are pretty normal. I'm hoping for good results from his next bone marrow test and that he can get the transplant quickly. The transplant itself is pretty simple - just like getting an infusion of blood cells.

Jean Sewing Machine
July 29th, 2012, 05:54 AM
I am so sorry to hear that Douwe is experiencing these problems, and is feeling so bad through it. As Krissy said, the chemo, destroys the immune system and it is so easy for infection to hit the person. Douwe is being taken care of by doctors, you, my dear, must take care of yourself. You must sleep, eventhough your mind is racing with thoughts about him and with worry. We are all sending our prayers to Douwe and your whole family, please trust that the prayers can lift you all up and get you through this. Be at peace, Douwe is in God's hands, lie down, rest and let sleep overtake you. My father quoted Shakespeare ( I think) and often said, " Sleep knits the raveled sleeve of care". So true.

denisecolli
July 29th, 2012, 05:55 AM
Klasien prayers. For you and your family. But you are. Going to make yourself ill try and get some sleep , I don't think your brother would want that. When my brain is running with thought I have a glass of warm milk and try to sleep or watching English TV at 3am usually works. againg prayers and thought with you all

buckeyequilter
July 29th, 2012, 07:31 AM
Klasien, my prayers are with you and your family. I know it's difficult to clear your mind at night and go to sleep. Take care of yourself.

quilter.martha
July 29th, 2012, 08:15 AM
Prayers for you, Klaisen and for your brother. I've been surrounded by family members fighting cancer almost all my life and it isn't fun to watch. Those medications go to the point of almost killing you in order to kill the cancer. Douwe's fevers are a result of that--there is nothing else he has to fight an infection. It is normal, but that doesn't make it easy to watch. I am praying for you and him. Get yourself some rest, even if you have to have a prescription to make you sleep. You won't be any good to anyone if you get yourself sick. Hang in there friend, we're all pulling for you!

DCM
July 29th, 2012, 08:37 AM
Your brother's report sounds pretty positive given all that he has been through and is still going through. Try to find a way to relax and sleep yourself -- if you get sick you won't be able to see him for a while. Hang in there -- it sounds like his doctors are on top of everything and that he is receiving excellent care. You need to concentrate on taking care of yourself.

rebeccas-sewing
July 29th, 2012, 08:46 AM
Dearest Klasien,

I'm so sorry for your brother's troubles. Try your best to get some rest. If necessary ask your doctor for something to help you until you get through this trying time. If you don't sleep your health will suffer for it. Your brother wouldn't want that. Worrying to the point of making yourself ill isn't going to help your brother. Hang in there. We appreciate the updates and we are all praying for better days ahead for your brother, you and the family. Lots of hugs coming your way.

Rebecca

pcbatiks
July 29th, 2012, 08:52 AM
Hi Klasien, What Jean and the others have said is true. I know it is very hard to make your mind stop racing but you really need to try and sleep whenever you can. Stress is easier to cope with when you are rested. Try watching a favorite tv show...lay down, relax, get your mind on the show and maybe you will drift off to sleep. We will be praying for you.......for much needed rest and sleep....and for Douwe as he goes through the treatment.

Blondie
July 29th, 2012, 09:15 AM
Good day Klaisen
I am praying daily for Douwe, of course, and also for you and the rest of the family. What you have shared regarding Douwe and his most recent experiences really do sound good to me. I will remind you what we were told about my own precious Mom 4 years ago - that "she would feel much much worse before she got better" And she is old enough to be Douwe's mother as well. At her age to survive all the fevers and other ravages of the body is inspirational.

I also know how difficult it is control your own emotions; I would tell myself to "cast down vain imaginations . . ." Much easier said than done. You are wise in throwing yourself into some busy work. Be sure and give your body some rest. I aged terribly during that time with Mom's serious illness. And you never really get caught up on sleep, or recoup the time spent worrying. No sleep, worry = not healthy for YOU.

Love you Klaisen. You know that I am here for YOU.

madampolo
July 29th, 2012, 09:37 AM
Douwe is having ups and downs, which I am sure can be expected. I am lucky that no one I know has had to undergo what Douwe has gone through. Take it one day at a time.

Monique
July 29th, 2012, 10:10 AM
Klasien, I am with everyone here. You DO need to get some sleep. If sleeping pills are not an option, try an anti-nausea medication. You can not get addicted and it will let you sleep. Prayers all around for you all.

Love,
Monique

CrazyMtnLady
July 29th, 2012, 10:37 AM
Klaisen, my thoughts and prayers are with you and your family daily. I know how hard it is to sleep or relax at a time like this. After my husband passed away from an accident in 1999, everyone was telling me to get some rest or eat something of which I could do neither. I would however drink a cup of nice hot tea and put on some relaxing music (celtic or Native American flute music works great) and lie down and just concentrate on the music, sometimes it worked and I actually slept for a while.

God Bless you and your brother.

sewbizzy
July 29th, 2012, 11:09 AM
Klasien, you are going through such a trying time...along with everyone on this forum, I am praying for your brother...please take care of yourself...
I'm praying for you to be able to sleep and rest, too!...

Bubby
July 29th, 2012, 11:20 AM
Hi Klasien....I believe what you are trying to describe is the port that was put in Douwe's body to make it easier for him to receive medication without starting new IV lines every time. I pray that his infection will clear quickly and that the bone marrow procedure can happen very soon. It's such good news he is making healthy cells!

Klasien, you MUST do whatever it takes to help yourself relax. Would you be able to go for a massage and/or a pedicure? Try to do something for yourself and get your mind off your worries for a short time. You need some refreshing and relaxation. It's a hard road you are walking right now. Don't forget that we pray for you and Douwe and his family every day. Please take care of yourself...I worry about you. Hugs, Barb

BellasQuilts
July 29th, 2012, 12:21 PM
Klazien, we are all praying here for your brother and your family. Rest and sleep is required, especially if you are to be any sort of donor for him. Taking care of yourself, helps take care of him. Hang in there, take a good long walk or bike ride to get good and tired. stay business, but most of all positive thoughts can be very healing. Come here and we will give you a group hug when you need one.

Sandy Navas
July 29th, 2012, 12:23 PM
With all the strength flowing to you, from the prayers that are being said, we also ask for peace and rest. I wish that I had been able to get Douwe's blocks to you sooner; but they will be there soon and the comfort of our stitches will be felt by him and the family. My arms are around you - put your head on my shoulder and rest . . . we all send love to you!! We pray for complete healing.

middlesis1966
July 29th, 2012, 12:59 PM
Dear Klasien, I do hope that you find comfort and rest soon. Continuing prayers for you both!

Genny
July 29th, 2012, 01:12 PM
OK now, take a deep breath and try to calm down some. You have got to get some rest and take care of yourself or you're going to be sick. This is not going to help your brother any. I wish I could be there to give you a big hug, I think you need one. Once the antiboitics take ahold Douwe will start feeling much better. Think about the good news, his blood levels are rising. I'm sending your brother and you lots of prayers and hugs!

Klasien
July 29th, 2012, 01:44 PM
Where would I be without you, my dearest friends!!!

Thanks so much for all the comments, I will try to take better care of myself, it is hard though.
My parents on one side asking attention and depending on me......my DH and kids on the other side asking attention and depending on me......my salon, my barbershop in prison, my quilting, my house, my dogs........and there is always Douwe in my mind.

Just got a text message from Lilian, we can not visit Douwe tomorrow....the fever will not go down.....the bown marrow aspiate is tomorrow also........

Thanks for all the love and prayers!!!!

HUGS!!!!!!!!

Jean Sewing Machine
July 29th, 2012, 01:51 PM
Where would I be without you, my dearest friends!!!

Thanks so much for all the comments, I will try to take better care of myself, it is hard though.
My parents on one side asking attention and depending on me......my DH and kids on the other side asking attention and depending on me......my salon, my barbershop in prison, my quilting, my house, my dogs........and there is always Douwe in my mind.

Just got a text message from Lilian, we can not visit Douwe tomorrow....the fever will not go down.....the bown marrow aspiate is tomorrow also........

Thanks for all the love and prayers!!!!

HUGS!!!!!!!!
Many more prayers are coming for success of thetreatment. It was strange, I posted my previous message to you in the middle of the night, then I dreamed that I called you up to talk to you, and woke you Up from A sound sleep! I hope my dream was true that you Got some sleep!

HandsOffItsMine
July 29th, 2012, 02:08 PM
Lieve Klasien,

I responded to your Visitor Message before going to the new post. (((Klasien))) Don and I know that this is a trying time for you and the family. Douwe has the best of care and the cure of cancers is worse many times than the actual disease. You are the center point of the family, the go to person, it's a tough position to hold. It was that way during my Mama's illness. I so wish I was there to hug and be by your side as physical friend versus a cyber friend.

One thing that is important for you to do and it is tough as you want to care "First" for everyone else and this goes against what our heart and brain think is right...You must take care of yourself first! You won't be able to be there for everyone in the long run of this course if you get worn out and sick, sweetie. I don't remember what Benedryl is in Dutch but it's for allergic reactions to bug bites, food allergies, etc. Take two and you will be nodding off. :)

Mam's went through stages like Douwe just like many wrote about, it's a path that many patients go through. It's hard for them and hard for loved ones to watch. Just know that all of you have a battallion (sp) of friends praying daily.

Huggers and sending healing light over many ponds, Ruby and Don

K. McEuen
July 29th, 2012, 02:11 PM
To chime in with the choir here, you need to work on getting sleep.

Douwe is going through some fairly typical things right now. Sometimes the port site gets infected. Don't be surprised if they don't isolate him until the infection is under control. (no visitors = less germs around him) As long as Douwe keeps up the great attitude he's shown so far, he'll do good. I know it's hard to do when you have an infection and fever, mostly you feel like crap and want to sleep. Sleep is good though, both for you and him.

You and yours are continuing to be in my thoughts and prayers.

janluna
July 29th, 2012, 06:22 PM
Klasien, we are lifting Douwe and you in prayer. Sleep whenever it will come. Everyone is right, you have to take care of you first. Otherwise, you won't be able to help the rest of your family. I know the waiting takes a toll. My granddaughter has gone through the same thing. Her line became infected and had to be removed too. They had to put in a Lumen Power Port in her chest and that has worked out better. We will say prayers everyday as we have been. It is actually better for the transplant if nothing is in his bone marrow. Emily's transplant is being held up because she has cells growing. I know she has a different illness, but they treat her the same as a cancer patient. I know the limbo you are in. We are too. Waiting for the transplant can be so trying! Our thoughts and prayers are with you.
Try reading a boring book, that always makes me sleepy. With the tv on low in the background maybe it will help you nod off. The Benadryl would help too. Hugs, Love, and Prayers, Jan L.

sewmuchjan
July 29th, 2012, 09:38 PM
Oh My dear friend, you need to rest....put a funny movie on the TV...a really dorky one and have some wine...laugh...laugh...release all the tension that has built up in you...laughing will help, and the wine will relax you enough to enjoy the dorky funny movie and you will be surprized at how you feel afterwards..you just need to release the tension...sending hugs ((((((HUGS)))))))) and prayers for you and your famliy..Relax and let go for awhile darlin....Love you and we are here for you dear...

Love and Blessings,
Jan G.

MRoy
July 29th, 2012, 09:57 PM
Sending prayers and hugs for you and Douwe. Please try to get some rest. I know it's hard, but you must take care of yourself to be able to care for others.

auntiemern
July 29th, 2012, 10:40 PM
My dear Klasien, You need to take heed what all have said before me. It is not uncommon for the central line to become infected during the time he is most susceptible. Everything you said sounds to me like he is on his way to getting better. As Blondie said, he has to get sicker to get better. But GF I am here to tell you, that you need to care for yourself. He is being cared for by dozens of doctors, nurses, techs, and others. You will do him no good, if you get sick. I know it is easier said than done, but don't worry so much about him, he is being cared for. Take care of yourself. Eat and get some sleep, even if you need to get a prescription from your doctor for something. I have always said that the patient receives all kinds of care, but no one is caring for the family, and they need care as well. Praying for you and Douwe, and the rest of the family.

phoots
July 30th, 2012, 04:27 AM
Klasien, I have been praying for you and for your brother! I pray that he's fevers and infection will go away very soon and that the doctor's are able to do the transplant soon! But it will happen in God's time, not ours!

As for sleep...when I have trouble sleeping there is a channel on the TV here in the states called Jewelry TV. When I can't sleep I put that channel on and I'm usually asleep in about 15-30 minutes!!

God bless you!!

Pam in Vegas